Meet Our Seven Impact Grant Awardees

The Cystic Fibrosis Foundation has awarded the 2016 Impact Grants to individuals or organizations making a positive impact on the cystic fibrosis community.

Jan. 19, 2017 | 8 min read
Piper-Beatty-Welsh
Piper Beatty Welsh, J.D., M.P.A.
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On behalf of the Foundation, I am pleased to announce the first recipients of the Cystic Fibrosis Foundation Impact Grants, a program that provides up to $10,000 per year to individuals or organizations that benefit the cystic fibrosis community. All applications were reviewed by the CF Adult Advisory Council, an external review panel made up entirely of adults with cystic fibrosis. The results were every bit as inspiring and innovative as we have come to expect from all of you.

Ultimately, seven exceptional applicants received grants, from programs devoted to helping people with CF achieve their personal fitness goals, to supporting and educating CF spouses and caregivers. As a person with CF, I was particularly excited to see such dynamic proposals, and I look forward to continuing to grow the Impact Grant program in the years to come. It is therefore with great pleasure that I announce the 2016 Impact Grant awardees. The Foundation is proud to support these organizations in their important missions to benefit our community.


 

The Cystic Fibrosis Lifestyle Foundation (CFLF) is a nonprofit that helps people with CF maintain a healthy lifestyle. Through its Recreation Grant Program, the CFLF awards financial assistance to children and adults with CF who demonstrate a financial need and personal desire to improve their physical well-being. The Impact Grant will allow CFLF to help people with CF stay physically active through gym memberships, yoga classes, swimming lessons and more.

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"As an adult with CF, I see just how important it is to make time for exercise, just like I would any other treatment or therapy. Now, in my seventh year of running the Recreation Grant program, I have seen firsthand how drastically a person's physical and mental health can be altered by removing the obstacle of financial burden that comes with paying out of pocket for things like gym memberships or yoga classes. People with CF who are looking to better their lives through exercise are welcome to apply for a Recreation Grant." - Erin Evans


 

The United States Adult CF Association (USACFA), a nonprofit run by adults with CF, offers the community an opportunity to exchange medical and non-medical information through its quarterly national newsletter, CF Roundtable. The USACFA will use the Impact Grant to cover the price of printing, mailing, distribution and website upkeep.

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"The U.S. Adult CF Association has been publishing [the] CF Roundtable newsletter since 1990! It's written by adults with CF, for adults with CF. Our motivation has always been to link adults to each other by getting them to share their experiences with CF, their challenges, their successes and pitfalls. We hope to engage more adults within the CF community -- including those with transplants or [those] awaiting them and especially young adults who are transitioning to adult care -- through our CF Roundtable newsletter, website resources, social platforms and events, such as our awards programs and speaking events." - Stephanie Rath

To contribute articles to the quarterly CF Roundtable or blogs for the website, email cfroundtable@usacfa.org.


 

Project CF Spouse is a nonprofit dedicated to educating and supporting spouses of people with CF. The Impact Grant will be used to grow the 150-person group, which started on Facebook, into an organization that will provide educational resources and access to other spouses and people with CF.

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Being married to someone with CF presents unique challenges that only other CF spouses can understand. The idea for Project CF Spouse stemmed from several conversations that I had with some CF moms about the supportive relationships they had formed with fellow CF parents. I wanted to develop this type of support system for my fellow CF spouses. The biggest thing that I am looking forward to this year is just getting everything up and going!” - Megan Barker  


 

The sINgSPIRE program, through Breathe Bravely, focuses on the art of singing as a way to combat the effects of CF. With the Impact Grant, sINgSPIRE will provide 15 students 10 weeks of free, private voice lessons with a qualified voice instructor, who will work on strengthening participants' respiratory systems and improving their self-awareness and confidence.

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“Music and singing have played an integral part in my management of cystic fibrosis. I have inherently felt the benefits of a life dedicated to the art of singing and want to share that with others with CF so that they, too, may know how powerful their voice can be. Singing has given me a deep self-awareness of my CF … and it has given me the tools to help understand the power in finding my maximum breath potential and voice.” - Ashley Ballou-Bonnema

If you or your child would like to participate, go to www.breathebravely.org/enroll.


 

Empower Project, part of Attain Health, is an online health coaching and personal training program for individuals with CF. Each participant receives one-on-one time with an integrative health coach and personal trainer, and the program includes weekly check-ins, video conferences and a specific workout plan that coincides with individual needs.

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“We are so excited to work in partnership with individuals in the CF community who are motivated to create positive change in their lives through bolstering their exercise, mindfulness and nutrition goals. Seeing individuals who have faced such adversity in life remain motivated to achieve their greatest health and ultimately succeed in obtaining their goals will be so rewarding for us. We cannot wait to engage in the process of change with individuals who we see as warriors.” - Kat and Mike Porco


 

Miles for Cystic Fibrosis will use its Impact Grant to support Project BreatheStrong, which provides grants for children and adults with CF to take part in activities that will improve their mental and physical heath. In addition, the Impact Grant will be used to provide information on nutrition and exercise to the CF community through the Miles for CF website, social media and other communications.

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This Impact Grant will make a huge difference in our ability to expand our program throughout the CF care centers in Georgia. We started in one pediatric clinic and now look forward to offering our program in all the CF clinics in the state. We have connected with a few nonprofits in other parts of the country who are also engaged in promoting exercise and recreation for people with CF, and hope to learn from each other to increase our effectiveness and our reach." - Rebecca Penuel

Children and adults with CF, who are treated at a clinic in Georgia and are interested in getting help in paying for a physical activity of their choice can ask their CF social worker to give them a BreatheStrong application and help them submit it.


 

Continuing Education for Caregivers/Individuals with CF supports individuals affected by CF through educational workshops that concentrate on various aspects of the disease. The Impact Grant will help the group form a nonprofit that will support people with CF in following their treatment schedules and share information about how they can take care of themselves, or support someone else as a caregiver.

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“With this grant, we hope to establish a community of families with CF, and with parental input, provide educational opportunities on topics of need and interest. We are targeting parents or caregivers of those with CF as well as teens or adults with CF. We plan to offer at least six workshops over the course of the year, bringing in speakers on a variety of topics. We look forward to each workshop and to meeting other parents with children with CF, and hope to provide support to others through the workshops and networking opportunities." - Jennifer Webber

For more about this project, email cfparenteducationgroup@gmail.com.


 

Congratulations to all of the recipients!

(Note: The 2017 Impact Grant application process will begin in April. For more information, please visit the Impact Grants page, and check the CF Community Blog in March for additional updates.)

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Piper-Beatty-Welsh

Piper  was first diagnosed with CF at 6 weeks old in 1981, and has since been the survivor of two double-lung transplants. Piper attended Emory University, received her J.D. from Columbia University Law School and then went on to earn her master's in public administration from New York University's Wagner School of Public Service. She is the owner and author of the popular CF and transplant blog, A Matter of Life and Breath, and lives in Colo. with her husband and puppy.

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