The Cystic Fibrosis Foundation today announced the recipients of its seventh annual Impact Grants, a program which provides up to $10,000 in funding per year for up to two years to individuals and nonprofit organizations within the cystic fibrosis community who are leading projects to support people living with the disease. Since awarding the first Impact Grants in 2016, the Foundation has awarded more than $845,000 to 35 community-led programs that are helping improve the lives of people living with CF and their loved ones.
Supporting Diverse CF Journeys
Recently, the CF community reached a new milestone: According to the 2021 CF Foundation Patient Registry Annual Data Report, the median predicted age of survival for people living with CF born between 2017 and 2021 is now 53 years old.1 As high-quality, specialized care and new treatments that address the underlying cause of disease for many people with CF have helped add decades of life, many people’s experiences with the disease have changed.
This year's Impact Grants support the CF community from initial diagnosis through adulthood. The CF Foundation is committed to supporting people with CF, especially as people with cystic fibrosis get older and the disease becomes more complex.
“People with CF are living longer than ever before, and they need connection and support from diagnosis through the different milestones of their lives,” said Sue Sullivan, RN, vice president and head of community partnerships at the Cystic Fibrosis Foundation. “From providing a welcoming, educational community for caregivers of recently diagnosed children, to a support program for male sexual and reproductive health, the Foundation is proud to award four new Impact Grants to individuals and organizations who are supporting people with CF and their families, wherever they are on their journey with the disease.”
2022 Impact Grant Recipients
- Bright Beginnings, Brilliant Futures is an online space where primary caregivers of newly diagnosed infants can build community, empower their families with tools to live full lives, and feel hopeful about their children's futures. This two-part program includes a series of self-guided informational modules and an online community of support. Bright Beginnings, Brilliant Futures was created by Jennifer Drake, MS, RN, CPN, Lisa Green, MA, and Audrey Tluczek, PhD, RN.
- CF Master Class is an online program that features a series of educational videos designed specifically for parents, guardians, and caregivers of children and young adults with CF — all created by parents and caregivers in the community. Topics include advocating for your loved one, raising multiple children with CF, diversity and CF, and more. CF Master Class is led by Laura Bonnell, a mother of two daughters with cystic fibrosis.
- STROLO University: Promoting Sexual and Reproductive Health for Men With CF is a virtual support forum for people assigned male at birth with cystic fibrosis to share their CF-related sexual and reproductive health experiences, define priorities for research and care, and create resources for both clinicians and people with CF. This program is led by Brian Callanan and Georgia Brown, both of whom live with CF.
- The Nourished Breath is a virtual, bimonthly journaling workshop for adults in the CF community. These 60–90-minute workshops are grounded in a warm, online environment that prioritizes the connection and comfort of the writers who join. The Nourished Breath is led by Aimee Lecointre, an adult with CF.
2021 Impact Grant Renewal Recipients
The following 2021 Impact Grant recipients have been awarded renewals for their programs:
- The DistrActors: Founded by professional performer and adult with CF Rebecca Shook and her spouse, Bobby Shook, this group of comedic actors creates personalized music, storytelling, and skits to provide emotional support for children with CF during hospital visits.
- Exercise Training for Teenagers With CF: Led by clinical exercise physiologist and pulmonary exercise specialist Taylor Lewis, this virtual program helps teens with CF learn proper exercise techniques to build personalized exercise routines, avoid injury, strengthen performance, and enjoy physical activity.
- I Can Imagine: Led by artist and adult with cystic fibrosis Dylan Mortimer, this program offers virtual art sessions for adults with CF to create visual representations of their unique experiences living with the disease. The program aims to display select artwork in CF care centers and hospitals across the country to inspire hope and healing.
About the CF Foundation's Impact Grants
Launched in 2016, the Impact Grants program reflects the Foundation's mission to help people with CF live long and fulfilling lives. From physical wellness to connectivity and creativity, these grants support programs that empower an individual’s sense of living and thriving with CF. Recipients are selected in consultation with the CF Adult Advisory Council, an external panel entirely composed of adults living with CF.
The CF community can participate in these programs at no cost through award funding. Individual signups and audience for each program vary, so visit the website for each program, if available, or reach out to firstname.lastname@example.org for questions.
Learn more about Impact Grants and the 2023 Impact Grants application opening in January 2023.
12021 Cystic Fibrosis Foundation Patient Registry Highlights. Bethesda, Maryland. ©2022 Cystic Fibrosis Foundation