Year in Review
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“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 Callanan, M.Ed.
Founder / Director
$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.
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.
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.
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.
“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."
“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.
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"
“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!!"
“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."
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.”
“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.
“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!”
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.
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.
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.
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.
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!
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.
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.
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.
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.
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.
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.
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.
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.
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”.
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!
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.
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.
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.
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.
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.
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