2013 Annual Report

Year 2013

Year in Review

 

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Hello

From the Director

“The car goes where the eyes go.”
The Art of Racing in The Rain

Having been diagnosed with cystic fibrosis (CF) at birth has always played a factor in how I have seen myself, as well as how I feel I am seen from the outside. Early on CF was something I viewed as a factor of who I was - sometimes negative, sometimes positive.

Through great pain physically and emotionally during adolescence, and hitting a period of rock bottom with a coinciding depression and pneumonia, I learned the interconnectedness between my mind and body.

Just three years later, I climbed to a significant high after backpacking through the ‘Outback’ of Australia. Returning home after six months abroad, my ecstatic sense of life and accomplishment was paired with a 10% increase in my lung function. I realized then that I could have a certain level of control over both my psychological and physical experiences with CF. This enlightenment is what underlies my founding commitment to the cystic fibrosis community with the CF Lifestyle Foundation (CFLF).

In Garth Stein’s book The Art Of Racing In The Rain, the unique skill of the main character to successfully negotiate a wet race track was to let his sight lead the car through the slippery corners - "The car goes where the eyes go." I have related my navigation of CF to my passion for snowboarding, particularly in the trees. I learned that if my sights became set on the trees I was trying to avoid, I would be much more likely to be distracted by them with an inevitable magnetism, than if my sights were set on the gaps between the trees. The car (or my snowboard) would go where my eyes would go.

The metaphor I relate to my CF is that my sights are set on achieving health, instead of avoiding illness. There is a big difference here: I choose to focus my vision on the gaps between the trees, instead of the trees I do not want to hit.

In driving the CFLF with the propulsion of many wonderfully dedicated volunteers, my sights are set on helping my peers with CF to learn the potential for greater control they may have over their mental and physical experience, especially those who struggle the most. Just changing one’s line of sight will alter their course for life.

Brian Signature

Brian Callanan, M.Ed.
Founder / Director

Growth

Approach

$250,000 Matching Grant

With the Flatley Foundation leading the charge on this amazing matching challenge for 2013, the ongoing support of philanthropists, grassroots fundraising and grants from foundations and corporations was able to surpass all previous years.  The match was received in February 2013, and was met by the CFLF in October, only eight months into the challenge.

"This incredibly generous opportunity enabled significant program and operational growth in transforming CFLF to the next level."

One of the biggest accomplishments of 2013 was being able to achieve level funding on a monthly basis for the Recreation Grant program. The opportunity to also invest in the infrastructure and capacity of the organization was also necessary to handle such significant programming growth.

2013 CFLF Overview

2013 PROGRESSED IN A SURPRISINGLY AGGRESSIVE AND TRANSFORMATIVE WAY.

The commitment of the Flatley Foundation with such a sizable matching grant pushed the CFLF fundraising efforts into high gear to surpass the 2012 fundraising and grant income by more than $58,000.

Implementing a level funding for the Recreation Grants program in March 2013 also provided a higher prioritization and more predictable schedule of expense for the primary program of the CFLF.

New partnership with Aptalis Pharmaceuticals in the fourth quarter of 2013 also provided a significant $75,000 toward the growth of the Recreation Grant program, along with development of promotional materials to be rolled out in all CF treatment centers going into 2014.

The CFLF also relocated headquarter operations to Miami, Florida with an administrative support person, in addition to the programming being run entirely from Vermont.

Goals

Transparency is an ultimate goal of the CFLF, especially in helping each donor to realize the actual impacts of their support.

The goal of committing 100% of grassroots fundraising dollars directly to Recreation Grants was achieved this year by supporting the fiscal needs of CFLF operations through larger corporate and foundation based grants. In securing and allocating unrestricted grants to cover administrative and event costs, individual donors could be assured that all 2013 event generated income raised through their participation would change a life with cystic fibrosis.

Expenses

2013 CFLF Expenses
 

Thrive

The Reality

The CFLF is about guiding the choices made to live successfully with CF.

Through recreation grants and educational programs, CFLF assists people living with CF to thrive, not just survive.

By fostering healthy and active lifestyles through fitness, exercise, good nutrition and outdoor recreation activities, CFLF educates people living with Cystic Fibrosis on the critical psychological, social and emotional connections between their lifestyle and their health.

 

FROM GRACE SULLIVAN (MOTHER OF ELLIE SULLIVAN)

“The Cystic Fibrosis Lifestyle Foundation has greatly enriched our daughter Ellie’s life. At one month old, she was diagnosed with Cystic Fibrosis. Only two short months later, she was hospitalized for the first time with pseudomonas. Before her first birthday, we were back in the hospital with pseudomonas again, this time receiving the diagnosis of a chronic case. We were very upset and looked for ways to keep her healthy and strong. That’s when we heard about the CFLF. They generously supply funds to help make possible healthy activities to keep children with CF strong and active.

We cannot thank the CFLF enough for the great impact they’ve had on Ellie’s life.

Our daughter loves to climb, run, jump around, and tumble, so we decided to apply for a grant for gymnastics. We were thrilled with the quick response from the foundation and couldn’t believe that they paid for a full year’s membership. Without their financial assistance, we could not have been able to afford this considering how expensive her medications, doctor visits, and hospital stays have been. We’ve been going every week for a few months now and Ellie loves it! She looks forward to putting on her sparkly green leotard and joining her friends as they learn the basics of gymnastics. It was been an absolute joy to see our daughter learn and grow in an activity that she absolutely loves. She is able to meet new friends, strengthen her body, and gain confidence and pride in the new things she’s learning."

Ellie Sullivan

 

FROM AMANDA MURPHY AND FAMILY

“On behalf of Amanda and our family, we would like to send a heartfelt thank you for the Recreation Grant that Amanda was given last year.  With these funds, Amanda was able to continue with her weekly dance lessons for the 2012-13 school year.  Here she is at her dance recital in June. 

Amanda Murphy

We are very hopeful about the new medications and therapies available and under development for patients like Amanda with CF, and understand the importance that exercise has in keeping her healthy.

Thank you very much for helping us with that goal by awarding Amanda this Recreation Grant. We greatly appreciate the assistance and the work that you do! Thank you!!  Sincerely, Amanda, Cindy and Sean"

Amanda Murphy Thank You

 

FROM NATALIE BROWN (MOTHER OF SOPHIA AND SAVANNAH BROWN)

“Wow, thank you so much!! Sophia (below) and Savannah (right) are both currently enrolled in gymnastics and dance, and we pay monthly.

Their Recretion Grants will cover several months tuition for them, which is a lifesaver!

We have four children, three with CF and our expenses are so great that we have struggled to keep them in activities because of the cost. The CFLF now makes it possible for the girls to continue with the activities they love!!!!

Thank You again!!"  

Sophia Brown

 

Savannah Brown

 

FROM JYO BUYYALA (MOTHER OF MICHAEL O'HARE)

“Just a quick thank you to all of you on the CFLF team! I am so grateful for the grant you awarded for Michael to attend Farm Camp.

It did him a world of good physically and emotionally, all made possible by the generous grant.

Here is a picture of Michael grinning at camp last week.  Many thanks to you all and wishing you a wonderful rest of the summer."

Michael O'Hare

 

 

FROM RACHEL HUGHES (MOTHER OF JACK HUGHES)

Thank you so very much! You have no idea how much this helps our family!

"It's hard to tell Jack 'no' when it comes to participating in a sport he absolutely loves. This Recreation Grant helps us tremendously…

Again, thank you so much for your time and patience in this. We were so pleased to hear about CFLF. Reading Brian Callanan's story was so inspiring and sounds so much like our Jack. We have shared his story with Jack as someone he can look up to with CF.”

Jack Hughes

 

 

FROM ANNA MODLIN

“The opportunity to attend the World Transplant Games in Durban, South Africa was a life changing event.  Not only was it a exciting athletic opportunity, but it was a dream come true to travel to South Africa."  

With the help of the CFLF, and my organ donor, I was able to make this dream come true.

Anna Modlin

 

 

 

FROM GRANT MANCZUK

“Thank you for the money you granted me.  It helped pay for my swim team fee.

I think what CFLF does is incredible; giving kids the chance to do something they love. The world needs more organizations like CFLF! 

I plan to swim again this year and hopefully earn a scholarship for college. I enjoy swimming every day. It’s an easy way to clear my mind as well as my lungs. I met some people thru swimming that are now my closest friends and they support me and help me reach new goals.  Thank you again for the grant; it’s helped me in ways I can’t describe. I look forward to working again with you soon!”

 

 

Grant Manczuk

The Rationale

The experience of living with cystic fibrosis today is markedly different than it was just decades ago.

The discovery and mapping of the CF gene has transformed the scope of available therapies and technology. While the face of medicine continues to evolve, so too does the face of CF. Today, the 30,000 Americans who deal with the disease day in and day out are living longer and fuller lives.

Sights are now focussing on preventative and proactive approaches to living with CF is increasingly needed as the population of CF patients living into adulthood continues to grow. In the United States, 43% of all CF patients are over the age of 18 and the mean survival age is currently into the 40’s, a significant increase from only two years old before the mid-1960's.

Cystic fibrosis continues to be a lethal disease for many. However, the CFLF believes in changing the perspectives, mindset and attitudes of the entire CF community. Healthy and active lifestyles are critical as adolescents and young adults become socially independent and responsible for their own care. Exercise based activity provides not only a supplemental form of airway clearance for the chronic lung congestion of CF, but also opportunities to build relationships of support, improve self-esteem, and to have FUN while doing all of that.

Exercise continues to gain attention as a medical necessity for people with cystic fibrosis, but incurs associated costs not typically covered by health insurance. By removing financial barriers for patients craving exercise and activity, focus is shifted from surviving CF, to thriving with CF.

Activity camps for cystic fibrosis once providing essential peer support and exercise based programs, but were forced to close in the 1970‘s due to development of drug-resistant bacteria and the threat of patient infection. Strict infection control is why CFLF strives to promote exercise-based recreation for people with cystic fibrosis on an individualized case-by-case basis.

The Education

Since 2007, the CFLF has helped and encountered an amazing population of people with cystic fibrosis willing and determined to not only survive, but to also thrive.

Living Xtreme logo

A challenge has always been reaching and inspiring the many people with CF who are not in need of financial assistance, but still struggle with the acceptance and determination to face this challenge head on.

In 2012, the CFLF partnered with two other organizations in the undertaking of an HD video documentary, “Living Xtreme: Beyond Cystic Fibrosis”. This project highlights the lives and stories of people with Cystic Fibrosis who engage in extreme activities and physical lifestyles. The subjects are individuals who not only choose to be empowered by their disease, but also overcome the challenges in living beyond any perceived limitations of CF.

Living Xtreme: Beyond Cystic Fibrosis

Inspire

2013 Grants

With a total of 158 Recreation Grants awarded in 2013, a total of 375 awards have been made since 2007 when the program began.

This map illustrates the geographic distribution of grant recipients throughout this past year. In the following pages, you will see that the activities of interest that were funded by these Recreation Grants are equally as diverse as the geography.

One of the limiting factors of the CFLF Recreation Grant program is that it’s reach in the CF community inherently targets those in financial need. The undertaking of the video documentary “Living Xtreme: Beyond Cystic Fibrosis” enabled the reach of the CFLF mission to bypass socio-economic boundaries, and begin to provide the inspiration and importance of active lifestyles to all people with CF, along with family and loved ones that are so critical in not only surviving, but thriving with cystic fibrosis. This project aims at having a much deeper and global impact as a new and positive resource in the daily life of CF.

2013 CFLF Grants

 

2013 Grant Recipients

LOCATIONS

People in 44 states and Canada have been helped by CFLF.  Click on the upper right menu box in the map to see the locations of recipients by year since 2007!

 

PROFILES

Contessa Muniz

Contessa is a middle school teacher, and after running around after kids all day, she doesn't always have the energy to exercise. Having a gym membership would allow her to work out regularly and increase her strength and stamina. It would also help her overall physical fitness and lung function. Contessa wants to do everything she can to keep herself healthy and active.

Sophia Pulkovski

Sophia is a very active little girl. She likes to dance and play on her trampoline. Being able to take swimming lessons will boost her confidence and make her more comfortable in the water. The exercise she will get from swimming and moving in the water will also be beneficial to her lungs and overall CF health.

Grace Quartarone

Since starting to dance last year Grace has not had to go into the hospital. She feels this is because she has been dancing and exercising her lungs so much. Grace works very hard to stay healthy and out of the hospital, and she knows that dance is a fun way to feel like she doesn't have CF.

Katie Reisinger - McConville

Katie has played sports and remained active her whole life. She has found that over the years running has had a huge impact on her CF life. Physically it keeps her strong, and mentally it keeps her connected to others and more confident in her abilities. She recently started doing crossfit and loves how good it has made her feel. It requires mental focus and determination to get through each movement and workout. She knows that continuing with her crossfit training is going to benefit her CF health immensely.

Anthony Rogers

Anthony has found that practicing Tae Kwon Do has taught him how to be a stronger person. It has also taught him about committing to something and following through with it. Practicing Tae Kwon Do has helped his CF by strengthening his lungs and body. Anthony has always been very good about keeping up with his CF treatments, and he knows that continuing with martial arts will help him stay active as he gets older.

Sheila Rossi

Sheila started doing yoga a few years ago and has found that her life has been transformed. Since beginning to take classes, once a week, she has increased to doing yoga 5-7 days a week and has not been hospitalized since starting yoga. She has found that through yoga she not only feels healthier physically but also mentally. Sheila is a single mother of two, and yoga is the perfect way for her to stay healthy and balanced.

Anthony Rowe

Anthony enjoys playing baseball very much, which he finds helps with his CF by the physical workouts required in training for any given game. He enjoys the sport because it is fun, and he gets to be with his friends. Getting a gym membership at the YMCA will help Anthony stay in shape. "I know this grant would help improve my life because going to the YMCA can be lots of fun with many things to do to help improve my strength and health."

Teala Rowe

Teala is a second-time grant recipient who applied for a grant for a YMCA gym membership, which will enable her to work out and participate in Zumba classes. While she enjoys modeling, Teala knows that her efforts to keep up a healthy weight also require her to work out and stay in shape. With the variety of activities and classes offered at the Y, she looks forward to continually trying new things that help improve her health and help her lungs feel better. "I know that when my lungs feel better that I feel better, and that is why this grant is so important to me."

Rafael Ruffo

After finding out only a year and a half ago that he had CF, Rafael has been running as much as possible. Having a gym membership would allow him to run all year long and at any time of day, in any weather. Running helps him physically and mentally, and he knows without it, he would not be as healthy as he is today. He feels that his exercise routine is key in fighting cystic fibrosis and enjoying his time with his kids and seeing them grow older and have kids of their own.

Gina Ruiz

Gina is a three time recipient of a CFLF recreation grant. She's used her grant each time to get a gym membership at her local YMCA where as well as working out she enjoys Zumba, yoga, swimming, and spinning. Since first receiving the grant in 2011, she has not been hospitalized. She has not only improved her health but over the last few years has been educating herself more about CF and learning how to beat it everyday. "Life isn't easy but through this grant I've taken on challenges, both physically and mentally to improve my well being... I have become a stronger person overall and have learned to enjoy life."

Bernard Price

When Bernard is lifting weights, it makes him feel like he has power in his life, like he can do anything he wants. When he works out, he forgets that he has CF and can keep up with the others around him. Weightlifting also helps him mentally by putting him in a good mood, that no one can bring down. Having a gym membership is important to Bernard because it would get him out of the house and give him something to look forward to.

Natalie Newman

Natalie has a lot of activities that she enjoys like riding her bike, gymnastics, jumping on her trampoline, and swimming. She knows that in order to keep doing these activities, she has to be strong and healthy though. Working out with her personal trainer has helped her build muscle and strength, which allows her to play as much as she wants. "I would like to have this grant so that I can be healthier and so I can live longer."

Robert Nichols

As a police officer Robert knows he has to have a way to keep his mind clear and a way to deal with stress. He loves to golf and ride his motorcycle with his wife. These things take endurance and strength, which he knows he will gain by working out at a gym regularly. By working hard and exercising, he hopes to achieve a level of fitness that will keep him moving forward.

Emma O'Brien

Emma likes to do a lot of different activities, like rollerblading and skiing. She does martial arts the most though and has found that it helps a lot with her breathing. Martial arts has also been a good way for her to learn how to defend herself. Emma knows the importance of exercise on her lungs and wants to do whatever she can to continue to improve her lung function.

Michael O'Hare

Michael loves to run around outside in the park, woods, playground, farms, or anywhere he can. He is a very energetic and enthusiastic four-year old. Running and playing help get out some of his energy, and it helps when it's time to do his treatments. Being active also helps him eat and sleep better, which are very important for someone with CF. Being able to go to summer farm camp will allow Michael to have a fun new experience while learning about cooking, farming, hiking, and farm animals. It will also help him develop his social skills with other kids his age.

Brian Peppin

Being able to go out golfing allows Brian to not think about CF for a while. He has found that golf is a lot like CF - they both take time and dedication to master, and you have to be good at all parts of it, not just one. Swinging a golf club lets him release his mind of all the trouble and worries that CF brings.

Jessica Perretti

Being able to do yoga regularly is very important to Jessica. Not only does the practice help her mentally but it keeps her lung function scores consistent. She loves to play with her nieces and wants to make sure she has enough energy to run around with them. She also notices a huge positive difference in how clear her lungs feel and how few exacerbations she has when she's doing yoga frequently.

Elizabeth Petersen

Elizabeth hopes one day to play professional volleyball when she's an adult. She knows that playing as much and as often as she can will make her lungs healthier and make her stronger. She loves to play volleyball with her friends and family.

Sarah Petersen

Sarah doesn't let her CF keep her from doing the things she loves. She has been playing volleyball for a number of years and loves it. She plans on playing for as long as she possibly can. Volleyball helps her physically by working her lungs and making her stronger. It helps her mentally by reminding her that she can do everything that everyone else can do.

Leah Sands

Leah started running in the summer of 2013 and immediately knew she had found an exercise that she loved. "There was such a freeing feeling it gave me-being out in the open air, being able to go at my own pace, and being able to feel the benefits immediately." Every day that she runs she feels an improvement in her energy levels, self-esteem, and overall health. Every time she sees an improvement in her health, she is more motivated to continue on the path of running. "It would be so wonderful to be able to start the spring months with better endurance, to be able to compete in more 5K races, and maybe even improve my times!" Leah used her Recreation Grant to get a gym membership so she can continue running through the cold winter months.

Corey Sarkis

Corey loves to play soccer, not only because it is fun but also because it is good exercise. He knows that playing regularly helps his lungs stay healthy. Playing in high school for a soccer club allows him to play year round, which helps his CF. "Playing soccer helps me forget about having cystic fibrosis. I feel like every other kid when I am playing in an exciting soccer game. Soccer works my body and my mind." Corey used his grant to pay for his soccer team fees.

Samuel Schroeder

Sam's favorite activity is weightlifting. He used his grant to get a gym membership because he wants to get stronger, build more muscle and stay healthy. He knows cardio training along with weight training will help clear his lungs out.Sam also enjoys riding his bike and playing with his dog.

Kaitlyn Vargas

Kaitlyn, through CF, has learned to be compassionate towards others. Through her love for gymnastics, she wants to inspire others with CF to stay in control of their health. She has been doing gymnastics for 3 years, and competes with great determination. In addition, she has built a bond with her "sisters" in gym class, and they motivate her to be all that she can be. " When I do gymnastics, CF does not hold me back. Mentally, gymnastics makes me feel so free. CF can't stop me."

Austin Warkentin

Austin strives to be a role model for people with CF. He works hard at exercising and staying healthy so that he can show others that there is hope and that staying active will help them live a better life. Austin has been riding bikes since he was 5 and knows that it's because of his love for cycling that he is as healthy as he is today.

Shannon Watson

Shannon's favorite thing to do is ballet. Not only does she think it's pretty, but she also has lots of fun doing it. It is a good way for her to get exercise and stretch her muscles. Doing ballet also helps keep her lungs and heart strong, and she knows that is good for her.

Nancy Weiner

Although Nancy doesn't always have the energy to work out, when she does, she feels better both physically and mentally. When she exercises, she feels strong. Her outlook on life is optimistic and she feels like anything is possible. Although it's hard sometimes to get started, once she's finished working out, she feels energized and stronger than before.

Jeff Weinstein

Living in Florida, you can't always go outside to exercise. Jeff knows that a gym membership would allow him to exercise regularly without having the weather be a factor. It would also motivate him to get out of the house more and have something fun to look forward to, while helping to improve his lung function.

Ian Wissel

Ian loves to play tennis. Last year, the CFLF provided a grant for him to attend tennis camp. "When I play, I feel pumped. It's exciting to see how I'm going to hit the ball each time." He has been feeling healthy lately all thanks to the CFLF Recreation Grant, his consistency with his medication, therapy, and his love for tennis.

Jessica Wood

Jessica's favorite physical activity, since she was a little girl, had been cheerleading because of the pride and teamwork the sport brings. With her best friend, Tori, as her Peer Support, the two help each other to grow personally and physically through cheerleading. "This sport helps me manage my CF physically because I exercise 4 days a week for 3 hours. It helps the mucus in my lungs move, and also helps me build my lung strength. Mentally the sport helps me through the pride and teamwork helping me to not give up even if it is hard on my CF." This grant will allow Jessica and Tori to receive private cheerleading lessons to build their skill, health and enjoyment of the sport together.

Jessica Workman

One of Jessica's favorite physical activities is running. She finds that running several times a week is one of the best ways for her airway clearance. When she is unable to run for a week or two, the difference she feels in her lungs is drastic. Her recent completion of a 10k showed her and others that "CF does not have to put limitations on people." While training for the 10k, Jessica saw a noticeable increase in her lung function scores, which has helped her maintain a high priority on fitting time to run into her busy schedule. This grant will help Jessica afford a gym membership that will enable her to continue running all year round, any time of day. She looks forward to running another 10k next year, and possibly even a half marathon!

Kylee Wornell

Kylee understands the importance of keeping her lungs active. Her two favorite activities are horseback riding and hot yoga, both of which she finds physically and mentally challenging. Needing to stop teaching after five years because of constantly becoming sick, has taken an emotional and financial toll on Klyee. She finds her motivation to exercise often to be lacking when it is up to her alone. With her boyfriend Pat as her Peer Support, this grant will help Kylee stay active through her more consistent practice of hot yoga, ongoing access to horseback riding and also indoor rock climbing. Also the support and encouragement of Pat will give her the incentive and accountability to be more consistently active, which is when she sees her lung function improve most.

John Youhanan

John wants to stay as active as possible with his favorite sports, soccer, swimming, basketball, baseball and football. He knows that being active can be fun, and he gets to spend time with his family and friends while he's doing it. Swimming also helps clear his lungs, just like doing his treatments does."I want to be a good swimmer to improve my life with CF." This grant will help John to both attend his 6th Grade camp, as well as obtain a YMCA membership for himself and his Peer Support, and older sister Georgia.

Kelly Taylor

It all started with a curious call to "Fight Time" and getting information on MMA (Mixed Martial Arts) classes. Kelly had two free classes he could try out for, and after the first class "He was hooked." He felt full of energy and was excited to join; "better than sitting around watching T.V." Kelly's life has improved socially and emotionally, he finds himself happy again. Kelly has made the decision to make a change in his life, and not only depend on antibiotics to keep him out of being hospitalized, but do what he loves and "fight" against CF.

Jessica Sykes

Jessica's favorite physical activity is field hockey. She plays for her local high school and really enjoys what she does, especially with the support from her teammates at school. The gym will be her alternative when she is in off season from playing the sport she loves in the cold winters. Jessica understands the importance of living stronger and longer, thus the importance of this gym membership. "I try my best to stay active and if I am able to go to the gym and do runs, I will be the healthiest I can be, and continue a healthy lifestyle."

Ellie Sullivan

Ellie is an energetic and happy three-year old. She likes dancing, singing, climbing, exploring and spending time with her friends. Gymnastics is a way that she could do all the things she enjoys, and she would be able to make more friends. Being able to go to gymnastics regularly will help her CF by keeping her active and her lungs clear.

Bree Seidel

"Five letters spell what I love to do, Dance." Dancing has become a very big part of Bree's life over the past 3 years. Dance has helped her build stamina and strength. It gives her an alternate way to do her lung clearance. This grant not only releases financial burden for her mother, but allows Bree to continue to do what she loves. "Dancing gives me a mental release; there are no walls or roadblocks when I hit the dance floor; I am free when I dance."

Annika Shelstad

Yoga and the elliptical machine are Annika's favorite physical activity. This grant will help relieve stress and make her feel better about herself. She works out with her neighbor and close friend who, together, motivate each other and consider doing a 5k together soon.

Michael Shove

Michael's favorite activity is by far swimming. He was a competitive swimmer for 10 years and felt the healthiest when he was swimming regularly. Michael's lung function scores were also the highest when he swam, and he knows that it's the reason why he's so healthy today. "There is no doubt that swimming, a sport that revolves around breathing, can and will help any person with cystic fibrosis."

Ashlee Skow

Yoga has changed Ashlee's life since she started doing it. It has helped her to not only manage her stress, but also it helps her breathing tremendously. She can feel herself getting healthier and stronger every time she does yoga. She works hard to stay healthy so she can continue her yoga practice as often as possible. She is training to be a yoga teacher and hopes to show others with CF the importance of yoga.

Pearl Smith

For Pearl, horseback riding is not only a form of exercise, but also an activity that brings her both confidence and joy. She shares her love for horses and drawing with her little sister, and her CFLF grant has allowed both girls to continue taking horseback riding lessons together.

Alexander Smith-Rinehart

Alexander's favorite activity is swimming because of the feeling of the water on his arms and legs. He also loves the fresh smell of the water. It also helps him strengthen his lungs and makes him stronger. He also likes that when you're underwater in the sea you get to see all the life around you.

Daisy Solis

Daisy feels that any activity that gets her moving is good for her. If it makes her heart pump faster, she knows it is helping her whole body, as well as her lungs. Working out also helps with her self-esteem and mental health. She likes to do yoga after she works out because it calms the tense muscles in her back from coughing so much.

Jenna St. Laurent

After a recent hospital stay, Jenna worked with a physical therapist, who for the first time for her was familiar with CF. She realized after 2 weeks of therapy, how exercise impacts her physically and mentally; she fell in love with working out. Living in harsh weather conditions, the gym allows Jenna to work out throughout the year without depending or worrying about the climate. "My breathing improved greatly with High Intensity Interval Training (HIIT) workouts, and the airway clearance it provides helps me cough much less. My health and quality of life will continue to improve with my access to a gym."

David Stolz

Lacrosse is David's favorite sport because it's fun, and he has lots of friends on his team. He has found that it helps him breathe easier from all the running that he does when he's playing. He has also noticed that it helps him socialize and raise his confidence. David hopes to play some day in college.

Max Knipstein

Max loves to swim and has been doing it for a number of years. He swims all year round because it makes him healthy and happy. A grant would help him to be able to swim in the winter as well as the summer, and he hopes to continue doing that. He has noticed how much better he feels after he swims, and this keeps him motivated to keep doing it.

Matthew Lail

Matthew has always loved riding and showing horses. His family has had horses for years, and he feels that riding and showing are "in his blood." Other than riding horses, he has found that having a gym membership has helped his CF a great deal, and it makes him strong so he can keep riding horses. Going to the gym regularly gives him social interaction that he doesn't get as much since he stopped working. Matthew works really hard to stay compliant with all of his treatments and medications, and knows that a gym membership would help him to keep even healthier.

James Lawlor

Yoga has quickly become James's favorite physical activity. "More than anything else, it has a great capacity to positively influence my physical and mental health." He loves the combination of strength building, flexibility, and mental health in respect to CF. He has also found it reassuring to be reminded of the strength in his body, rather than feeling weak and defeated by his CF. He's looking forward to continuing his yoga and benefitting from it physically and mentally. "I come out of yoga class feeling relaxed, energized, and able to handle whatever stress life throws my way."

Judy Layton

Judy has been able to exercise from home but knows that having a gym membership would help her to get out of the house and improve her overall self-esteem. She was diagnosed at age 46 and has been doing everything she can to stay healthy. She wants to live a long and healthy life and knows that having an exercise routine will help her do that.

Taylor King

Dance is a way for Taylor to express herself and get exercise at the same time. "I know exercise is good for my CF, and I like to dance, so it doesn't feel like something I am forced to do." When she is dancing, she can take her mind off her CF and just dance. Being able to continue her dance classes is very important to Taylor because she knows what a huge impact it will have on her health. Taylor works really hard to keep herself healthy, and dancing has motivated her to keep working hard at it.

Faith Khoma

Faith's favorite physical activity is gymnastics because it's fun and it keeps her healthy. Participating in gymnastics lets her spend time with her friends, while also keeping her lungs strong and clear. Faith works very hard and wants to continue to do gymnastics so she can win first place at competitions.

Danielle Kemper

Running is difficult at times for Danielle, but she loves how she feels after so she keeps doing it. Now that she has a toddler she wants to stay as active as possible so she is healthy enough to take care of her daughter. Having a gym membership would motivate her to keep running and exercising regularly.

Samantha Keiser

As a cheerleader, Samantha's favorite physical activity is gymnastics. She used her grant to take gymnastic classes, helping her improve her hand stands, tumbling and stunting skills and overall fitness level. Not only does gymnastics improve her energy level, it mentally relaxes her. She also enjoys spending time with her siblings, horses and dogs.

Shannon Kalahar

Shannon has been swimming since she was very young. She swam competitively for all of her childhood and teenage years. When she went into college, she switched to running. Shannon is a very focused and determined person and wants to do as much as she can to stay healthy. She knows that being able to have a gym membership where she can use a pool regularly is going to boost her health even more. "Swimming has taught me self-confidence and respect for my body. My lungs stayed cleared, and I stayed out of the hospital (and in the pool) almost all the way through high school... I'm ready and excited to add the pool back into my daily routine!"

Ashley Josselyn

Ashley requested a Peer Support grant that would enable her to exercise with her husband, Mark as her companion. While Ashley, like many, struggles with motivation, she realizes having the support and encouragement of her husband to go to the gym together would be of great benefit toward improving her weight and lung function. She also finds the winter climate of Ohio as a limiting factor in her motivation and ability to exercise regularly. This grant enabled her to obtain a gym membership for both her and her husband.

Isabelle Johnson

Even at just 6 years old, Isabelle loves to ice skate because it gives her energy and makes her feel tall. She used her grant to take ice hockey classes, allowing her to perform her favorite physical activity while being surrounded by other children. "I like hockey because I like to skate. I like when the big kids help me. Hockey helps me cough."

Matthew Lied

Matthew hopes that if he practices his karate and works hard that he will be able to continue lessons and get better and better. He knows that being able to do karate will be good exercise for him. It's hard to go out in the sun a lot, so being able to do karate regularly will be a good indoor activity for Matthew.

Kayleigh Lund

Cheerleading is Kayleigh's favorite activity, not only because she loves being with her teammates and coaches but because it keeps her strong and healthy. She loves to compete in front of people at competitions and do tumbles and stunts. She has found that cheerleading keeps her flexible and in good shape, which helps her stay healthy overall. The jumping and running around she does keeps her lungs clear and gives her energy to take on her CF. Kayleigh used her Recreation Grant to pay for her cheerleading team fees.

Christa Lux

Although Christa's treatments can often interfere with fun activities that she wants to do, she knows that doing them and staying active are very important. She loves to play basketball because she has to run around and this increases her strength. She also likes getting to play with her friends and working as a team. She knows that all the running she does in sports helps to improve her lungs.

Anna Modlin

"Swimming is a sport that throughout my life has contributed to the quality of life, physically and socially." Anna has been swimming most of her life, on swim teams, or as a swim teacher, coach, or lifeguard. When she swims, she feels confident, and it gives her a full body workout. It helps keep her lungs strong and healthy, and she contributes her excellent lung function to her love and passion for swimming. Being able to travel to South Africa to compete in swimming at the world transplant games is a lifelong dream of Anna's. She has dedicated herself to her fitness goals and her health through compliance with diet, medications, and exercise and hopes to be an inspiration to others with CF.

Jonathan Miller

"I recently took up ballroom dancing in an attempt to find an activity that could provide the benefits of being with friends while getting a workout. I can honestly say that in the short time since, dancing has become my favorite activity." Jonathan loves being active and finding fun ways to do that. Ballroom dancing has been a great activity for him because it appeals to his love of music and his competitive side. Also, this activity allows him to meet new people and reach new levels of personal development.

Justin McKay

Justin wants to get back in shape so he can run and be active without getting tired. Having a personal trainer would help him learn how to use the gym equipment. Getting stronger and more physically fit is very important to Justin. He used to be more in shape when he was younger because he played football. He is ready to work hard to get back to that.

Mikayla McDonald

Being out in the woods hiking and breathing fresh air has always helped Mikayla feel healthy and clearheaded. She has found that yoga has this same effect. It allows her to de-stress, drain mucus from her lungs, and build strength. Exercise is very important to Mikayla. It helps her to feel empowered, and yoga is one way she can get that. She feels more grounded and mentally healthy as a result from practicing yoga regularly.

Paul McCormick

Paul loves to swim. The freedom of the water benefits not only his spirit but his lungs as well. He swims regularly at his local pool and usually swims half a mile. When he's done, he can feel that his lungs are clearer, and he's stronger and healthier overall. Having his lungs cleared from swimming helps him do his treatments more effectively as well.

Kate Marshall

Kate loves to play soccer and works really hard to stay out of the hospital so she can keep playing. Having CF has made her a stronger and more responsible person, and she wants to be a role model to others with CF. Playing soccer not only makes her physically strong, but it also makes her mentally strong.

Molly Manczuk

Molly loves to play volleyball because it is a fun and challenging sport. She is a second-time grant recipient who has used both awards to pay for her competitive volleyball team fees. Even at a young age, she knows how important exercise is in keeping a healthy CF lifestyle. "By having this grant, I can enjoy my favorite sport and continue to play it. This grant will help me stay active and healthy."

Grant Manczuk

Grant is a second-time CFLF grant recipient and has used both his awards to pay for his swim team fees. He loves to swim and run because they are both low-impact sports that allow him to exercise not only his lungs but his whole body. "The last CFLF grant allowed me to swim and make friends over swimming. Sports help keep me moving and help me feel better about myself." Grant plans on getting a swimming scholarship when he goes to college.

Drew Major

Drew loves to ski not only because he gets to go off jumps but because he can get fresh air. He has found that the jumps and bumps from skiing help clear his lungs. Skiing is a way for Drew to build his confidence while doing something fun with his friends and family.

Mariah Mumpower

Mariah has been dancing since she was four, and she loves doing it. She loves being in shows with her friends and laughing. She wants to keep dancing as long as she can because she can tell that it's helping her breathing.

Kassidy Jenkins

Kassidy loves to dance because it takes her to another place and sets her mind free. She hopes to one day dance on TV. "Dancing just gives me a feeling like no other." When she hears music come on, it makes her happy, and she knows this is good for her CF as well.

Tyler Hunt

Tyler likes to do martial arts for a lot of reasons. It not only keeps his lungs strong and healthy, but it keeps him in shape and allows him to meet new people. Doing Tae Kwon Do also helps him to stay out of the hospital. CF can be very stressful, but having an outlet like martial arts helps a lot.

Corey Gradin

A few summers ago Corey spent some time doing a lot of swimming and noticed how it drastically improved her lung function and physical stamina. Since then she has tried to continue a routine of swimming regularly. "Though it's one of the hardest kinds of endurances to build up and easiest to lose, it also reminds me I can do more and be more confident in my body." Swimming and getting good at it have been an important and constructive escape as well as being good for her physically.

Elena Goodrow

Elena loves to play outdoors. Her whole family loves to run, and she knows that running is good for her and makes her healthier. When she runs she feels like she could go anywhere. She also loves to feel the wind in her face. Doing weight training with other kids at her mom's gym would let her feel like a normal kid. Even though CF can be hard at times with all the medications and treatments, she knows that this, as well as exercise, will make her healthier.

Tara Gire

Since Tara was very young, she has loved to sing and dance. Participating in show choir allows Tara to do both of those things. She gets a lot of exercise and energy from performing with the show choir. Being able to share her love of music with others is very important to her. She not only gets to do something she loves, but she also gets to stay in shape.

Josilin Gibbs

In the last two years, Josilin has received Recreation Grants from CFLF for dance classes. Dancing is something Josilin loves to do, not only because it is a fun, social activity, but because it makes her stronger and healthier. "The grant made life better because I got to dance and it made me stronger and healthier and bigger. It makes me feel like a champion to do what I want to do and to be who I want to be." Josilin plans to continue taking dance classes and wishes to one day become a dance teacher.

Jason Gay

Jason enjoys playing soccer and baseball. His Recreation Grant enabled him to enroll in his school's after-school soccer program. "Soccer will help improve my life because it's good [for me]." Jason hopes that he will get to play as much soccer as possible in the coming year and remain healthy.

Shelby Gately

Shelby loves to play hockey and knows that if it weren't for how active she stays year round, she would not be as healthy as she is today. She is proud to say that she has never skipped a treatment and that she doesn't plan on ever doing that, nor has she been admitted into the hospital since she was 3. Shelby knows that this is because of how disciplined she is with her treatments and staying active through sports. "Hockey practice and hockey games make me very disciplined just like I need to be with my daily CF treatments." Shelby used her grant to pay for her hockey team fees.

Grace Gastreich

Being able to go to summer swim camp would allow Grace to swim in the hot weather. Swimming when it's hot out is one of Grace's favorite things because she gets to cool off and hang out with her friends. When she swims, she has to take deep breaths, which she knows makes her lungs strong. She hopes that if she practices her swimming and works hard she will be able to join the swim team.

Martha Garvey

Martha loves to snowboard because it allows her to feel in control. With her CF she doesn't always feel in control, but carving down a mountain on her snowboard makes her feel alive and like she's controlling her life. She knows that being out in the fresh air getting exercise helps her lungs. She feels happiest when there is a snowboard attached to her feet.

Larry Gainus

Larry has found over the last few years that working out and exercising has had a huge impact on his CF health. Being able to stay active gives him a sense of normalcy. Getting a gym membership would give Larry something to look forward to and would motivate him to continue to exercise and eat right. It would be a positive thing for him when a lot of the things he deals with on a daily basis are negative.

Cameron Grant

Cameron loves to swim in the summer because it keeps him cool and active. Hot weather can be hard for him because of his CF, but being able to dive on the diving board, practice his strokes, and hang out with his friends at the pool is fun. Being able to go to summer camp will let him swim multiple times a day with all of his friends. At summer camp he will also be able to run around and play tennis and other activities that he likes. All the running around helps clear his lungs and keep him healthy.

Kasey Greene

Kasey's favorite physical activity is Tae Kwon Do. She feels that it's a great workout, and it teaches her ways to push her body. She has also noticed that it helps her to cough and clear her lungs afterward. Participating in Tae Kwon Do has taught her about patience and working hard.

Lauren Gregoire

Even with all the challenges that come with CF, Lauren is able to dance just as well as her peers. When she's dancing, she forgets she has CF until she's out of breath. Having CF and keeping up with all her treatments is stressful but being able to dance is something she feels lucky to be able to do.

Jack Hughes

Jack lives to play sports. He loves being part of a team, especially his baseball team who support him and come visit him in the hospital when he's sick. Jack is tall for his age and is practicing to be a pitcher for his baseball team. Being a pitcher means having mental toughness, as well as physical toughness. Having baseball to look forward to helps Jack get through the more challenging parts of CF.

Emily Hethcox

Baton twirling is Emily's favorite activity. It's really difficult to do and so she feels lucky to be able to be so good at it. Being involved with baton classes keeps her active because it is a good aerobic exercise. It helps keep her lungs healthy because baton consists of gymnastics, dance, flexibility, and hand-eye coordination. Baton classes also help her mentally by taking her mind off her CF and letting her feel like a normal kid.

Michael Hebert

Michael enjoys playing baseball, flag football, street hockey, and basketball. He likes to hang out with his friends and play sports because it lets him feel like a normal kid. "This grant will help me have fun, and the sports are good for my lungs." Being able to attend summer sports camp will allow him to play lots of sports and meet new friends.

Michael Hanania

Michael loves to play sports because it keeps him strong and his lungs healthy. His favorite sports are soccer and football. Being able to go to sports camp will let him do all his favorite things, and it will help him improve his skills.

Jacob Hanania

Jacob's favorite physical activities are football and swimming. Playing sports makes him more active, and it exercises his lungs and makes him healthier. Going to sports camp will let him get better at sports and help him to make new friends.

Rae Lynn Haliday

Rae has noticed the huge impact that working out 4 or 5 times a week has had on her lungs and overall strength. "I sleep better, I feel better, I breathe better, and my quality of life is much better." Pushing herself to keep exercising and staying physically fit also helps her lung function, which keeps her out of the hospital.

Sophia Haga

Sophia loves the feeling of flying through the air. In gymnastics she gets to do that, and hang out with her friends. Gymnastics makes her stronger and helps to clear her lungs. Being involved with gymnastics makes her feel healthier and motivates her to work hard and stay active.

Erin Gunn

As a second-time grant recipient, Erin is a powerful example of the various benefits exercise can have in one's life. With her husband as her continuing Peer Support person, she is motivated and supported not only in her life with CF, but also in her exercise swimming and working out at the gym. Although the effort Erin puts toward her treatments, medications and exercise seems relentless at times, she considers it a small sacrifice. Her lung function has continued to improve over the past year of utilizing her CFLF Recreation Grant, which has given her great excitement, inspiration and hope in dealing with the disease. "I'm a dedicated person and I work incredibly hard at everything I do - and having CF is no exception. I see it more as a challenge than anything else." Erin looks forward to her continued time swimming and working out at the gym with her husband, and knows that she is continuing to add time and quality to her life.

Naomi Guillemin

Naomi has lots of different physical activities that she enjoys, like Zumba, hot hula, swimming, and yoga. She has found that the different activities affect her differently. Swimming helps her breathing, yoga relaxes her, Zumba gives her energy, and hot hula helps make her stronger. Naomi is a very determined and self-motivated 13-year-old. She has done research in her science classes to learn more about CF and what her body needs to be healthy. She knows that exercise will make her healthier and stronger than ever before.

Raizel Grossbaum

Having summer camp to go to each year gives Raizel something to look forward to. Doing treatments and taking medications can sometimes be hard and tiring, but when she goes to camp, she doesn't think as much about her CF because she's having so much fun. She likes to cook, do art, play tennis and swim at camp. Going to camp is her favorite activity, and she is sad when it ends.

Savannah Brown

Dance is Savannah's favorite physical activity. All of the routines she does help her to push herself really hard. The routines are difficult, and they challenge her both physically and mentally. Having dance in her life motivates her to keep her lungs and body healthy so she can keep participating.

Sarah Boys

When Sarah was born the doctors told her she would not walk or talk. Because of her extra challenges with cerebral palsy, diabetes, and hydrocephalus, she has to work even harder to stay healthy. She has found that horseback riding is an outlet that lets her forget about her problems. When she rides she feels free, like she is flying. She is able to relax when she is around her horse, and just walks with him. It also helps clear her lungs, and it makes her feel happy.

Bree Bowers

As a second-time grant recipient, Bree has realized an ongoing positive effect from exercise on her lung function scores, as well as emotional well-being. Her commitment to regular exercise at the gym has also paid off with her increased stamina, which she has found helpful in both hiking and running. Her photo shows her at the top of the Hollywood sign in LA. "Thanks to the exercise I have been able to do through the CFLF grant given to me for a gym membership, I had built up the strength and stamina needed in order to hike to the top of the sign without needing to stop for rest. Both my lungs and legs were strong enough to conquer this feat." Bree's grant renewal was used to continue her gym membership.

Sophia Brown

Cheerleading helps Sophia's lungs feel healthy. She loves to cheerlead because she gets to dance and do gymnastics and stunts. She also likes it because she gets to hang out with her friends. She knows she has to keep exercising to stay strong and work her lungs.

Trey Burkhalter

Trey's favorite activity is karate. He likes karate because it's fun and he gets to learn how to defend himself, while it also helps his lung function. Practicing karate also helps him to learn how to achieve goals, and work hard.

Alex Campbell

Alex loves to play sports like soccer and basketball. He used to live in Mexico and was always playing soccer. Running around helps clear his lungs and lets him have fun. Having a gym membership would allow him to play the sports he likes as well as using the pool for swimming, and the rock wall to climb on.

Anna Campbell

Anna loves to play volleyball because she feels it is a fun way to maintain her CF. In volleyball, she runs a lot, which helps her to cough stuff up. She used her grant so that she could play volleyball, year round. When she is playing volleyball she knows it's not only helping her physically but it gets her thinking and hopeful about her future. "Playing volleyball is not only a fun thing to do, but it also makes me believe that I can live a full and healthy life."

Luis Canales

Luis is a passionate young man who enjoys anything that keeps him physically active. His favorite activities include tennis, going to the gym for weightlifting and riding the stationary bike, and learning how to swim. With his girlfriend Vanessa as his Peer Support person, there is a motivating and supportive companion. She helps drive Luis to be healthy so their time is primarily spent enjoying activities together, instead of being in the hospital. Luis realizes that exercise helps him in dealing with his CF mentally, as much as physically. "These activities allow me to prove to everyone else that I am not limited in my ability to do anything... physically they allow my lungs to expand and my body to just feel great. I develop more of an appetite, endurance and strength. Mentally they allow me to focus on other aspects of life and let me feel normal for a change." Luis looks forward to the support he will experience at the gym with the help of his Peer Support through this grant for a gym membership.

Jesus Chavez

When Jesus was younger, he was able to participate in sports, which helped keep him healthy. As an adult he has found that going to the gym regularly has also helped his health. He pushes himself so he will get stronger and not get tired or out of breath easily. Jesus goes to the gym 3 or 4 times a week, even if he is feeling tired. Staying strong and active has allowed him to do all the other things he enjoys in life like playing basketball, or baseball, or riding his bike.

Jose Chavez

Jose loves to play basketball but as he has gotten older, he hasn't been able, or motivated, to keep playing. He knows that a gym membership will encourage him to stay active and healthy and therefore help his lungs get stronger and clearer. Working out regularly will help improve his breathing so he won't get tired so easily.

Scott Bosco

No training wheels needed! Scott is a determined young man who loves the feel of the open road blowing through his hair. He is not far behind his older brothers and sister, and keeping up on the bike always gets his heart and lungs going. This grant helped Scott and his older twin brothers who both also have CF to all attend a boys gymnastics program to continue to all be active together. The costs of food and medicine for Scott's parents would make sending all three to the same program unaffordable. With these grants they greatly look forward to the hours of play that will help all of them breathe easier at the same time.

Ian Bosco

As an avid football player, Ian already knows the importance of his health in pursuing his dreams of becoming a quarterback. In doing all of his medications and treatments, Ian believes that exercise would also be good for his lungs. "I think playing football and going to gymnastics would help keep me healthy. I like to jump on the trampoline and run on the bouncy floor. I would like to get stronger and more flexible so I can be a good quarterback in high school and college." The money from this grant helps Ian and his two brothers with CF to go to gymnastics together.

Brian Bosco

Brian loves to play flag football, and is on the same team as his twin brother Ian. He plays wide receiver and likes pulling flags. He loves to run fast when trying to tackle his brother or make a touchdown. "It is good for me to run to keep my lungs healthy. I think it is also good to play outside in fresh air. I like to be healthy because then I don't miss school so I can learn more and read more." With this grant, Brian looks forward to going to gymnastics, which he really liked in the past. "I got very strong from gymnastics, and I can still swing across the playground monkey bars two times without falling."

Shauntianna Anderson

Shauntianna applied for a Peer Support Recreation Grant so that she would be able to work out on a more regular basis with the support and help of her sister LaToya. While Shauntianna did not have the financial means to obtain a membership or gym equipment on her own, a recent hospitalization enabled her access to a treadmill, and felt noticeably better. She is looking forward to the regular access to all the weights and equipment necessary to help her lungs and body be in better shape.

Avery Barrera

Avery's favorite physical activity is swimming because it gives the whole body a workout, and his lungs always feel so clear after. However, he always felt as though he was not as fit as others, and was always too skinny. In trying to build muscle mass, Avery tried going to the gym with two of his best friends, and found he really enjoyed it. His request for a gym membership enables him to spend more time with his friends in a productive manner, while also building his confidence and self-esteem.

Jeen Battah-Melendez

Although Jeen likes to participate in a variety of activities, there isn't one that she likes better than the others. She knows that exercising regularly is a huge part of her airway clearance routine. Jeen finds that exercise makes her feel better emotionally as well as clearing out her lungs in a way that her vest cannot. Now that her kids are grown up, she has time to spend on taking better care of herself. She is looking forward to getting a gym membership with her husband and trying some new activities.

Francisco Beck

Francisco enjoys weightlifting because he feels it not only helps him through developing steady breathing, but also is helpful in relieving stress. "I think this grant will help me improve my lung function, put on some weight, and get back to enjoying the sports and activities I usually like to take part in." Francisco is clearly motivated to continue to improve his lung function and looks forward to doing so with the help of this grant for a gym membership.

Austin Blackburn

Austin has recently started cheerleading and has found that it helps his CF significantly. Being a cheerleader means being in top physical condition. Austin knows that by staying active he will be healthy and his lungs will be stronger.

Julie Blakeman

As a recent college graduate, Julie faces the financial responsibilities that makes pursuit of an indoor soccer league difficult. With many other activity interests, Julie's favorite is soccer, having played it since she was only five years old. "Soccer requires constant running, which increases my cardiovascular endurance and lung capacity. By the end of a game, I feel that I have done an additional breathing treatment. It is also an excellent stress reliever; every time I sprint for the ball or make an attempt at a goal, tension is released." In the winter months, it is much more difficult for Julie to be motivated for other activities, which are often more affordable outdoors. Julie believes firmly that her level of exercise today will affect her health in the future. This grant will enable her to pursue her desire to live a long and prosperous life by helping her be more active today.

Alyson Boltz

Alyson recently decided that she needed to make her health her number one priority. Her CF care is very time consuming and through yoga and working out, she has been able to learn ways to cope with the stress of it all. She knows that having a gym membership would force her to stay motivated and on top of her health. "When I used to have a gym membership, I always loved how accomplished I felt when I finished my workout. I would love to feel that way again!" Alyson used her grant to get a gym membership.

Lauren Bombardier

Running has done wonders over the years for Lauren's physical health. Since becoming a runner she has been able to fight CF even better than before. As she transitions into "adult life" she has found that her stress level has risen and that her overall health can be negatively affected by that. By being able to do yoga on a regular basis she knows that she will be healthier and stronger overall.

Eileen Adair

Although Eileen has always enjoyed running, the Colorado winters don't allow it to be a consistent activity. She knows that settling into a yoga practice will increase her lung function and overall wellness. "When I'm knocked down with an infection or having a tune-up (either at home or in the hospital), my energy is zapped and the last thing I can think about doing is running." Eileen is a busy high school teacher, so she has a lot of responsibilities to juggle as well as doing everything in her power to stay well so that she can continue to enjoy all the people and things in her life. Eileen used her grant to take yoga classes.

Tina Chieco

When Tina was younger, she played sports but as she has gotten older, it has become harder. She has a young daughter and wants to do everything she can to be healthy for her as she grows up. Having a gym membership has improved her lung function and overall well-being. Tina works very hard at everything she does and will continue to make a difference in her health as she gets older with CF.

Tovah Duffaut

Tovah knows that exercise is especially important for her because of her CF. She has been cheerleading for a few years and can't imagine her life without it. "It is not only physically a lot of hard work, but being part of a team makes me work harder so I do not let anyone (including myself) down."

Katherine Duffey

Katherine has seen over the years of living with CF that when she is exercising regularly she feels much healthier and stronger. Now that she has a child, she wants to do everything she can to stay healthy so she can be a good mother. Being able to run with her new baby in a good jogging stroller will help her exercise while taking care of her baby. She feels like she is a warrior and will never let CF stop her from doing what she loves.

Thomas Ellison

Thomas loves to lift weights because it allows him to get stronger and feel like a normal person. It helps his self-esteem to challenge himself and lift more. Working out also helps relieve his stress and improve his overall health. He works hard to stay healthy. Even though at times his CF can be discouraging, he knows that exercising will help him feel better.

Klyn Elsbury

Klyn knows that staying fit and active is the only way she is going to be able to keep up with her peers and do the things she enjoys doing, like surfing, running, working out, and laughing. She knows that when she doesn't stay active she ends up in the hospital. She has learned over the years that in order to enjoy life, she will always have to work twice as hard as other girls her age. "I love that cystic fibrosis has trained me to do more, produce more, be more." Klyn used her Recreation Grant to get a gym membership as well as some personal training sessions to help her learn how to use more of the exercise equipment. She feels that working out 4 or more times per week will allow her to not only have a long life, but a good quality of life.

Trent Emmons

Trent used his Recreation Grant to take martial arts classes. His interest for both karate and tai chi were self-taught from books and DVDs, but he decided that in order to improve his skills and further his studies, he had to take classes. "This grant will help me learn a new skill and improve my lung power. It will help me get exercise and meet new people with the same interests." Trent also enjoys outdoor activities such as hiking and walking because he likes to explore. He also likes to go fishing and hunting with his father.

Robert Fahie

Robert loves to take walks and is lucky enough to live close enough to the beach to walk there. Walking next to the ocean calms his mind and reminds him to stay positive about his CF. Becoming a member at a gym would allow Robert to stay active year round. He wants to have a high quality of life, and he knows that working out will help him reach that goal.

Cole Favro

Cole's favorite activity is karate because it helps his cystic fibrosis. The activities and things he learns in class help him to cough, which helps clear his lungs. His friend is a level higher than him, which helps him to work harder. He also wants to continue doing karate because he knows it helps him stay out of the hospital.

Amelia Fortunato

Swimming makes Amelia feel good, and it's easier for her to breathe after she gets out of the pool. She loves to swim with her friends and hopes to one day be able to join the swim team. Amelia knows that swimming is good for her body, and she hopes to do it for a long time.

Aaron Fox

Having been diagnosed only two years ago with CF, Aaron already knows just how important exercise is. His favorite physical activity is volleyball because along with having fun, it teaches him important skills like leadership, teamwork and perseverance. Physically, it helps him manage his CF because it makes him want to exercise, and mentally it helps him manage his CF by giving him a positive outlook on CF. "With CF, I know that exercise will always need to be part of my life. I'm glad that, for now, I am healthy enough to do what I love; play volleyball." Aaron used his Recreation Grant to pay for his volleyball team fees.

Cadence Foynes

Cadence is a very energetic four-year old. She loves to dance, jump, and play with her friends. Dancing is especially fun for Cadence. It not only makes her stronger and healthier, but it also makes it easier for her to breathe. She loves to dance because she is good at it, and she gets to do it with her favorite friend.

Julian Downey

Julian loves to play sports like baseball, football, and karate. He likes karate because it keeps him going. Karate exercises his muscles and keeps him moving all the time. His doctors have told him that doing exercise regularly will help keep his lungs healthy. Being able to go to baseball camp will help him get better at baseball and help him overall with the sports that he plays.

Collin Dougherty

Collin's favorite activities are swimming and playing basketball. He finds that swimming helps his breathing because he has to hold his breath for a long time. Playing basketball helps his lungs because of all the running around. When he does these activities, it takes his mind off his CF and it lets him have fun. Being able to have access to a gym would allow him to exercise more and get healthier; it would also help him make new friends.

Ella Deveaux

Ella loves to dance. Even though she is experienced in jazz, tap and ballet, her favorite form of dance is jazz because it is fast-paced. "I like jazz best because it is faster. Because CF affects my lungs, giving them a workout helps clear them. Ballet gives them a good workout without tiring them out. When I'm dancing I can forget about my CF and have fun!"

Crystal Chisholm

Crystal loves animals, especially dogs. She enjoys participating in dog sports and activities with her service dog more than anything else. She knows that this benefits her health from all the running around and moving she does. It is a good way to get airway clearance as well as giving her mental stability by taking her mind off her CF and giving her something to look forward to.

Courtney Collins

Courtney is a committed and competitive volleyball player who continually strives to better her game. She finds that playing volleyball is of significant benefit to her living with CF both physically and mentally. "Volleyball helps to keep my lungs in shape as well as my body strong. When I am playing volleyball, I put all my worries and cares out of my mind, and keep my head in the game - working as part of my team." Courtney knows that with the help of this grant to attend overnight volleyball camp, she will be pursuing her career dreams of being the best volleyball player she can be, while also maintaining her health.

Matthew Courtright

Matthew loves to run around and ride bikes. He also likes to play basketball, swim and do karate because they are fun activities. He knows that karate helps him stay healthy by exercising his lungs and body.

Mitchell Courtright

Mitchell isn't always able to go outside in the winter to get exercise so gymnastics is the perfect way for him to stay active. Doing gymnastics allows him to do things he loves like climbing and hanging on things. He also loves to play on the trampoline, which is really good for his lungs.

Charles Crowell

Being 52, Charles knows that finding ways to keep his lungs clear and strong is vital for his well-being. He has been doing pulmonary rehab for a while and has noticed that not only have his lung function scores gone up, but his weight has improved, and he finds it helps with depression. Having an activity like the pulmonary rehab to do also gets him out of his house and interacting with others.

Abby Currie

Abby loves to do gymnastics. She likes to do back handsprings and jump on the trampoline. Going to gymnastics makes Abby happy and it keeps her healthy.

Katherine Daly

As a kid Katherine rode horses as part of her treatment for CF. Now as she has gotten older, she finds that it helps keep her in the present moment as well as giving her courage and making her happy. She finds that horseback riding allows her to connect with herself, spiritually, emotionally, and physically. Horseback riding also helps to clear her lungs, and it makes her stronger and full of energy.

Tiana Davis-Seymour

Swimming and running are two of Tiana's favorite activities. She loves being in the water and swimming underwater, holding her breath. She not only finds the water a happy place to be, but also realizes that it helps her lungs by getting activity. She also enjoys running around and the feel of the wind blowing through her hair, but also the loosening and clearing of her lung congestion. She feels as though both of these activities contribute to her lung function improving. Her request was for both her mother and brother to be her Peer Supports, and to utilize a family membership to the gym. Recognizing the importance of both people as such important and supportive factors in her managing CF, and being active, Tiana was very clear about the benefit of them all being able to access the gym. "I think this grant will help my life improve a lot, because I can get the exercise I need during the winter when it is cold outside. During the winter is the hardest for me because going from a warm house or car to the cold bitter air tightens up my lungs and makes me cough a lot." Tiana is hoping this grant and access to the gym during the winter months will help improve her lung function and reduce the frequent hospitalizations.

David derKinderen

David's favorite activity is lacrosse. Besides working really hard in school to get good grades, he works hard at playing lacrosse. He knows that the running involved in this sport not only keeps his lungs healthy, but also makes him stronger. "Lacrosse helps me feel like a normal kid, and part of a team." David used his Recreation Grant to pay for his lacrosse team fees.

Allison Gagnon

Doing gymnastics helps Allison clear her lungs while she is having fun. She likes getting to know the other people in her classes and learning new tricks, like back handsprings. Staying active with gymnastics also gives her more energy to do other things she enjoys.

 

Loretta Morris Memorial Fund

The Loretta Morris Memorial Fund was established in 2010.

The Fund was created by Loretta's sister, Barbara Morris Harison with the goal of providing recreation grants to help those living with CF enjoy an active lifestyle. Loretta was born March 31, 1950 and died from CF at the age of 21 years. In spite of her illness she enjoyed the recreation activities of horseback riding and dance, and was also an avid reader. She was attending California State University at Northridge at the time of her death.

Over 40 donors have supported the Fund these past four (4) years raising $33,725 for recreation grants. To date, 54 grants have been made to children and adults living with CF totaling $25,000. The youngest grant recipient was just nine months old and the oldest recipient 54 years old. The Fund’s primary purpose is to provide grant funds for recreation activities enjoyed by Loretta and Barbara, which includes horseback riding, dance, aquatics/swimming, and golf. Grants for other activities are considered and have been awarded. California residents are given preference but grants have been made to CF patients across the U.S.

 

What do our GRANT RECIPIENTS say about the benefits of recreation
and exercise for healthy lifestyles?

 

Kayla Hays, Wisconsin
Horseback riding allows me to practice relaxation of my mind and body. I leave the stables feeling refreshed and happy. It is a very good leg and core workout.

 

Kayla Hays

Anna Modlin, California
Thank you from the bottom of my heart and lungs for this amazing grant. It is helping me to achieve my goals of swimming in the world transplant games. I thinks that this grant program is an amazing opportunity for people with CF to get involved with exercise.

Anna Modlin

 

 

Sofia Valdez, California
Thank you for awarding me the dance grant. I love to dance and this grant really helps my family to pay for it.

 

 

 

Sophia Valdez

Marianne Bjorkland, California
I want to thank you so much for the grant for Yoga Works. That meant so much to me. Yoga and swimming have been my salvation in helping me to deal with my CF.

 

 

Marianne Bjorkland

Owen Provencher, California
Our son, Owen, was able to participate in the the Vacaville Jets program. Owen eats breathes and dreams hockey, he loves everything about the sport and talks about it day and night. The program was great for Owen as hockey is a challenging workout and keeps the kids working hard. On the ice none of the other kids are aware of the daily struggles he is overcoming just to get a clear breath.

 

LMF RECIPIENT PROFILES

Owen Provencher

Ireland Nolan

When Ireland hears music, she can't sit still because she just wants to move and dance. Even at just three years old it's obvious to Ireland's mom that she is in her element when she's singing and dancing. When she dances and sings, she is also clearing her lungs and improving her overall well-being.

Kevin Pollison

Even though Kevin is very good at swimming and wins medals and awards for it, he does it because it keeps him healthy and is fun. He has been swimming for a number of years and has become stronger and increased his lung function tremendously. He also gets to hang out with his friends when he swims and just feel like a normal person.

Owen Provencher

Ice skating is Owen's favorite physical activity. He likes the feeling of gliding instead of walking. Skating around loosens his body and helps his mind get better and better. He also loves hockey because it is so much fun to skate fast.

Stephen Reeder

Stephen loves to play basketball. He has been playing since he was a young kid and not only finds it really fun but also finds that it helps him physically exert himself, which helps his CF. By getting better at basketball he knows it will help his lungs to stay healthy. He hopes that by practicing his basketball skills consistently he will improve and be able to play varsity basketball.

Karlye Stein

Karlye loves to be active. Her favorite things are jumping on her trampoline, playing soccer, and swimming. She knows that doing these things will help strengthen her lungs to battle her CF. Swimming is especially good for her because it helps keep her airways clear.

Malin Glade

Horseback riding is truly Malin's favorite activity to do. She finds that when she rides, she just forgets about her CF and her treatments, and just has fun. "I think that this grant would improve my life because horseback riding is very fun for me and as my horse trots or canters I bounce and it acts as a natural chest therapy, but lots more fun." Malin identifies horseback riding as an important part of her entire life in addition to its benefit with CF.

Sara Martins

Sara has been dancing for a long time, and she loves it. It feels right for her to dance and it is great exercise too. Dancing lets her feel like she can do anything she wants. When she's moving and dancing, it helps her to clear her lungs, which she knows is good for her CF.

Marianne Bjorklund

Marianne is an avid practitioner of yoga. She realizes it has a very positive impact on her physical and mental well-being, especially in regard to managing her CF. She has found it has great benefit in helping to release the muscles that are commonly tight throughout her back, neck and ribs due to chronic coughing. Also, the mental benefit that comes through her regular yoga practice provides her a greater calmness and ease in tackling all of her other daily responsibilities. "I truly believe that if I did not have yoga and all other activities I am doing, I would not be alive." Marianne is a true model of inspiration in her continuation of addressing her physical and mental health, and this grant will help her continue that regular practice through yoga. Namaste, Marianne.

Jacqueline Bonanno

Currently as the youngest CFLF Recreation Grant recipient, Jacqueline and her mom Gillian applied for a Loretta Morris grant to attend an infant swimming program. At less than one year old, Jacqueline loves to explore everything by crawling everywhere. Gillian believes that starting as early as possible to teach her the importance of good exercise routine is important for the long road ahead of her. Both having swum competitively in college, Gillian and her husband look to share their passion for the water with Jacqueline. This grant enabled them to do that despite the many other financial demands of CF. "Setting good habits early should help her with her long-term health. We want the best for her, and this grant will certainly help us. We know Jacqueline will be grateful for this grant."

Bree Bowers

Running, for Bree, is liberating and powerful. Since her lung transplant in 2011, she has found a greater love and appreciation of being active and living life to its fullest. "This grant will help improve my life by giving me the opportunity to go to the gym for the next three years. I will remain motivated with my sister by my side running on the treadmill, cycling on the bikes and using the weights to build muscle mass." Now having the opportunity to live with clear lungs, Bree looks forward to taking advantage of all the activities she could do now, and was not able to do before.

Jordan Cote

Jordan loves to swim laps. When he is swimming. he forgets that he has CF, and he is able to push himself physically. After he swims, he can feel his lungs expanding, and he can breathe easier. Jordan knows how important exercise is, not only for his body but for his CF health as well.

 

Together

Partner Organizations

Genentech

Since 2008, Genentech has awarded numerous substantial charitable contributions and event sponsorships totaling over $80,000 to the CFLF. Genentech is the manufacturer of Pulmozyme, a mucolytic medicine that is nebulized by patients with cystic fibrosis in order to create a more normal viscosity of mucous membranes. Genentech has been a leader in the corporate support of the CFLF with tremendous impact on the growth of the organization.

 

As a new partner of the CFLF, over $75,000 in support has provided the CFLF with a highly engaged partnership of outreach that brings the opportunity of CFLF Recreation Grants directly into every CF treatment center throughout the US. New and exciting programs to be offered by the CFLF are also currently in development with the support of Aptalis funding and resource involvement.

 

As one of the most up and coming companies involved in the development of cutting edge CF treatments, the promise of Vertex medications including Kalydeco and other combinations of medications has created tremendous progress and hope in the CF community by addressing the root causes of abnormal mucous. With over $35,000 in charitable grants to the CFLF, Vertex has supported the tremendous growth of the organization since 2012.

 

Foundation Care

Since 2010, Foundation Care has supported the CFLF with over $12,000 in funding and promotional support. Foundation Care serves as a full service retail pharmacy that provides customized patient care and personalized service focused on patients' health and well-being at the core. Based in St. Louis, MO, patients are served locally and nationally with a specialty focus on respiratory and diabetic treatments.

 

CHEST One Breath

OneBreath is an initiative of The CHEST Foundation, the philantrhoic arm of the American College of Chest Physicians (ACCP). Advisory Board member Thomas Lahiri, MD (Burlington, VT) was awarded the “D. Robert McCaffree, MD, Master FCCP Humanitarian Award” of $15,000 one time toward funding for the “Living Xtreme: Beyond Cystic Fibrosis” video documentary.

 

Gilead Sciences is the manufacturer of Cayston, an inhaled antibiotic that is an effective treatment of the multi-resistant bacteria Pseudomonas aeruginosa in people with CF. Gilead became involved with supporting the CFLF through a $5,000 toward the video documentary project “Living Xtreme: Beyond Cystic Fibrosis”.

 

In-kind Sponsors

The tremendous commitment of SalesForce to the non-profit sector has enabled an ongoing donation of this client relations management (CRM) cloud-based software. Valued at $15,000 per year, this program has revolutionized the ability of CFLF to track the lifetime of all grants and donations received across all campaigns and events, as well as all Recreation Grant payments tied to various funds. Cross-referenced information has become easily accessible through SalesForce, providing a tremendous empowerment to the CFLF management of data.

 

The generous support of Google AdWords Grants for Non Profits provides a $10,000 per month allowance toward increasing the online presence of CFLF, and awareness of cystic fibrosis, events, and the CFLF Recreation Grant program.  Thank you Google!

 

Foundation Support

RESEARCH FUND FOR CYSTIC FIBROSIS

As a founding supporter of the CFLF since 2006, this fund has provided ongoing support. Having been created in response to the passing of Dr. John Jacoby, who was a CF physician also living with CF, this fund has provided tremendous contribution to the CF community in numerous capacities.

THE FLATLEY FAMILY FOUNDATION

Since 2011, John Flatley and the family foundation have become increasingly involved with supporting the CFLF. Unrestricted and matching grants have enabled the CFLF to more than double it’s capacity and impact over the 2013 year.

ADDITIONAL SUPPORT

  • Smith Family Foundation – New York, NY
  • The Gerald K. and Virginia A. Hornung Famly Foundation – Shelburne, VT
  • State Street Foundation – Princeton, NJ
  • Key Bank Foundation – Cleveland, OH
  • NYSE Foundation – New York, NY
  • The Amgen Foundation – Princeton, NJ
  • Wilmot Wheeler Foundation – Burlington, VT
  • Boomer Esiason Foundation – New York, NY
  • Courtney and Victoria Buffum Family Foundation – Burlington, VT
  • Cystic Fibrosis Foundation Pharmacy – Bethesda, MD
  • Stark Community Foundation – Canton, OH
  • The Lintilhac Foundation – Shelburne, VT
  • Windhover Foundatoin – Sussex, WI

THANK YOU

CFLF would also like to extend acknowledgement and gratitude to the many other organizations that generously contribute financial and in-kind support anonymously. In particular, the majority of professionally printed materials was donated 100% through an anonymous corporate contribution.

2013 Fundraising

Breathe Deep for CF

Celebrating ongoing success, the Breathe Deep for CF social event has established awareness of Cystic Fibrosis and the importance of exercise in both the Boston and northern New Jersey area. An impressive 100% of funds raised in 2013 through admission, general donations and silent auction have been used to award Recreation Grants to people with CF across the country. In the five years the event has occurred in Boston, and two years in NJ, Breathe Deep for CF has generated over $40,000 for the CFLF.

 

Champ’s Challenge

In the 7th year of Champ’s Challenge cycling event continued yet another successful turnout with 100% of proceeds going directly to Recreation Grant awards. The multi-level bike rides combined with a BBQ reception and raffle on the shore of Lake Champlain attracted participants and supporters from across the country. In promoting the importance of an active lifestyle for people living with CF, this event holds great significance by engaging supporters of CFLF in practicing the mission of CFLF, while also contributing to the cause through outreach and fundraising. This event has generated over $80,000 for the CFLF since it’s inception in 2007.

 

 

Ways to Give

Board of Directors

The CFLF Board has ongoing need for support and involvement of volunteers on both the Board and Committee levels. Specific areas help is needed include financial oversight, website and online development, organizational development, and community outreach. Please visit the Board of Directors page on the CFLF website for more information.

Hosting an Event

Whether it is a backyard pool party, happy hour gathering at a local establishment, 5k walk/run in your neighbor, or bringing a team together for a larger existing marathon, ride or triathlon, there are several ways that the CFLF could benefit from nationally based grassroots events. Logos, apparel and promotional materials can be supported upon request.

Nominate CFLF

Thousands of family foundations and memorial funds commonly support nominated organizations with $500 to $1,000 gifts.  Supporters of the CFLF, grant recipients, and health care providers across the country have reached out to family, friends and neighbors on behalf of the CFLF to make a request to foundations and grants for nominal gifts. The incredible generosity that exists in the endless opportunities for support are mostly accessed through personal connection and recommendation of directed disbursements. The CFLF asks its supporters to submit requests and applications for one-time or recurring grants to be awarded to this cause. We can provide support upon request.

Company Match

Most employers support the causes that are important to their employees. If you are making a contribution to the CFLF through online or mail, please consider checking with your employer to double your gift. Also, employers associated with the United Way are able to automatically deduct from payrolls for a designated gift to the CFLF, as many large employers such as IBM and American Express also manage payroll managed contributions to the CFLF. Please consider this easy and painless way to support this mission.

Spreading the Word

The CFLF currently has a mailing list of approximately 2,000 and email list of 1,700. While the organization does not purchase any contact lists, the ongoing expansion of outreach is critically dependent upon supporters spreading the word about the mission of CFLF, fundraising events, and ways in which family, friends and loved ones have been directly aided by the programs of this organization. Please let others know of the good works this organization has provided and continue to grow, and materials to provide to others will be sent to you upon request.

Team

  • Barbara Harison | Board Secretary

    Barbara Harison, lives in Ventura, CA. She is now retired after a long career in public parks and recreation administration and management of her own consulting business, Harison & Associates. Barbara has an M.B.A. from Pepperdine University and M.S. and B.A. degrees in Recreation Administration. Barbara lost a sister to CF over 44 years ago and learned at the age of 64 years that she also has CF. In memory of her sister, Barbara established the Loretta Morris Memorial Fund with CFLF in 2010. The CFLF mission matched well with her career and active lifestyle. Since its inception, the Fund has awarded 91 Recreation Grants, totaling approximately $44,000. Barbara currently serves on Ventura Community College District Personnel Commission and has served many other community organizations. Barbara is an avid lap swimmer and enjoys golf, walking, reading, cultural arts and travel.
  • Joan DeCelie-Germana, MD | Advisory Member

    Joan DeCelie-Germana has over 18 years experience in Cystic Fibrosis that include serving as the director of the Cystic Fibrosis Center at Schneider Children's Hospital in New Hyde Park, New York for the past four years. Prior to this she had served as co-director of the Center for five years. Dr. Germana also spent nine years as director at the Cystic Fibrosis Center at Stony Brook, New York and was the Center Director at St. Vincent’s Hospital in Manhattan, where she was Brian Callanan’s doctor. Before that, she served as Director of University Medical Control at Stonybrook for five years. Dr. Germana is also an assistant professor of pediatrics at the Albert Einstein College of Medicine in the Bronx, New York. Joan has been involved in clinical trials for CF and is a strong advocate for living well with CF through adherence to medical therapies, nutritious diets and regular physical exercises. She is the proud mother of three sons.
  • Thomas Lahiri, MD | Advisory Member

    Tom Lahiri met CFLF’s founder/director, Brian Callanan, almost a decade ago when Brian came to him as a patient. Dr. Lahiri worked with Brian on formulating some early principles of CFLF and currently serves as the director of the Vermont Cystic Fibrosis Center. Tom grew up outside Hartford, CT and studied at McGill University and the University of Connecticut School of Medicine. He completed his pediatric residency at the University of Vermont College of Medicine and trained at Children's Hospital in Boston to become a pediatric pulmonologist. He wholeheartedly agrees with the mission of CFLF and tries to keep active himself, continuing to compete in running and triathlons.
  • Laurie A. Whittaker-LeClaire, MD | Advisory Member

    Laurie A. Whittaker, MD, is Assistant Professor of Medicine and Cell & Molecular Biology at the University of Vermont in Burlington. Dr. Whittaker holds the position of Adult Cystic Fibrosis Program Director/Associate Center Director at the University of Vermont College of Medicine/Fletcher Allen Health Care in Burlington. Dr. Whittaker received her undergraduate degree at the University of Vermont in Burlington and her medical degree from Tufts University School of Medicine in Boston. She completed her Internal Medicine internship and residency at the University of Colorado Health Science Center in Denver. Dr. Whittakercompleted her fellowship training in Pulmonary and Critical Care Medicine at Yale University in New Haven, Connecticut. Dr. Whittaker has been the recipient of many awards including the BRIN Award for Genetic Research from the University of Vermont, an American College of Chest Physicians Leadership Award, an NIH Clinical Research Loan Repayment Award, and a Travel Award for the National IDeA Symposium of Biomedical Research Excellence. In addition, she has served as Principal Investigator for several clinical trials and is a member of the Massachusetts Medical Society, the American Thoracic Society and the Northern New England Cystic Fibrosis Consortium. Dr. Whittakerhas co-authored articles for peer-reviewed publications including the American Journal of Respiratory Cell and Molecular Biology, American Journal of Pathology, Journal of Immunology, American Journal of Respiratory and Critical Care Medicine, among others. She has also edited co-authored multiple book chapters and research abstracts.
  • Rod Spadinger | Board Treasurer

    Rod was born and raised in Hawaii, and was diagnosed with CF at the age of three months. He received a Bachelors degree from the University of Hawaii, and lived in Chicago, where he earned an MBA from DePaul University. He now work as a Business Analyst at Bank of Hawaii. Rod is am extremely proud to display the talents of CF patients through the website Cystic Fibrosis Artists, a space dedicated to publicizing the gifts of those of us in this community. This website is intended to show the world that people with CF are a group to be recognized and respected, despite their challenges. Rod understands the importance of exercise for those who have CF, and how a faithful regimen can lead to a healthy, productive, and fulfilling life. He is excited to work with this team at CFLF to promote this lifestyle throughout the CF community.
  • Laura Spiegel | Board President

    Laura lives in Indianapolis with her husband and two children. A Marketing and Sociology graduate of the University of Notre Dame, she has over 12 years of Marketing and Sales experience in the medical device industry. A professional specialty and consistent passion of Laura’s has been working with healthcare providers and people living with chronic disease to help address the emotional and psychosocial aspects of their care. On August 13, 2013, this experience became instantly personal when her 5-week-old daughter Emily was diagnosed with CF. Now a feisty two-year-old, Emily is doing well, and Laura and her family are hopeful that a promising drug pipeline and positive approach to her day-to-day care will position her for a long and fulfilling life. In addition to enjoying traveling, writing, and nightly dancing in the kitchen with her kiddos, Laura is incredibly excited to contribute to the important mission of the CFLF.
  • Brad Riemer | Board Member

    Brad currently resides in Austin, Texas. He was diagnosed with Cystic Fibrosis while attending Texas Tech University where he received a Bachelors of Science. After teaching for five years he earned a Masters of Education from Texas Christian University. Brad is currently enjoying working as a Special Education teacher. He is very involved in the community and believes his experiences with cystic fibrosis (CF) have equipped him to support those struggling with different needs around him. Brad strongly believes in the power of exercise and activity to improve the mental, emotional and physical well-being of those with CF and is excited to join the CFLF team.
  • Tiffany McDaniel | Board Member

    Tiffany Monique McDaniel is a passionate and multitalented fighter of cystic fibrosis (CF). She has had many athletic and academic achievements in her life. In youth, despite being told that she could not do a lot of activities she was a singer in her church choir, cheerleader, played soccer in high school, and was a long time dancer, winning numerous dance competitions around the country including the second place prize-winner of the Miss America Pre-Teen Pageant in the year 2000. Now as an adult she continues to live the CFLF’s motto even after battling many health issues that often come with having CF. She accomplished her goal of graduating from college with her degree in American Sign Language. This passion to conquer all challenges has spilled over in her involvement with the Cystic Fibrosis Lifestyle Foundation. Tiffany is a courageous woman who never allows illness, race, or gender define her abilities. She aspires to bring all her high-energy creative flow into this organization to help continue the efforts of this cause to empower young and old fighters of CF live stronger longer as their best version of themselves.
 
 
 
 
 
 
 
 

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