Community Voice: Monthly Results Update
June 2025 Edition
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Dear Community Voice Member,
Welcome to the June 2025 edition of the Monthly Results Updates!
In these digests, we share the impact Community Voice members are making through participation in recent opportunities. In this month’s edition, we’re sharing more about:
- Survey Results to inform the CF Foundation’s Next Strategic Plan
- Update on the Sexual and Reproductive Health Public Comment
- New members joining the Financial Wellness Advisory Committee
- New members joining the Adult Advisory Council
- In case you missed it, our
Community Voice End of Year Report is now published!
If you would like to read about past projects, browse previous editions.
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Community Input Shaping the CF Foundation’s Next Strategic Plan
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Nearly 2,000 adults with CF, caregivers, clinicians, and others shared their insights reflecting the differing needs of people in the CF community as part of the Foundation’s Long Term Strategic Planning survey in Fall 2024. More than 500 people with CF and their family members also shared their experiences in a follow-up survey specific to digestive complications and aging with CF, which emerged as top concerns in the first survey. Check out the survey findings here, including community input on what the CF Foundation should be funding and advocating for.
Results from these surveys are helping to inform the CF Foundation’s next strategic plan for 2026-2030, which will be shared next year. Thank you to the many Community Voice members who participated in these surveys at such an important time in the Foundation’s strategic planning process!
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Sexual and Reproductive Health Public Comment - Update
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In April, the CF Foundation invited people with CF, families, and care team members to review and provide comments on a position paper (or draft guidance) related to sexual and reproductive health. The public comment received more than 15 responses from people with CF and their family members. Thank you to all those who took the time to provide feedback on the position paper “Sexual and Reproductive Health Guidance for the Cystic Fibrosis Community”. A multidisciplinary committee including CF clinicians and adults with CF reviewed all of the responses and submitted revised versions of the position for expected publication this fall. The final position paper will be featured at the North American CF Conference and shared with Community Voice this fall.
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Financial Wellness Advisory Committee Members
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We're happy to announce that the Financial Wellness Advisory Committee has welcomed four new members. They'll serve alongside clinicians and five other community members helping to create educational content, tools, and awareness-building strategies that can normalize financial challenges, fostering knowledge building within the CF community. This year, the committee's focus is to better understand the lived experiences of people with CF as they navigate short- or long-term financial impacts of life with CF. Congrats to the new members pictured below (one not pictured)!
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For helpful resources on insurance, coverage, and more, check out the Managing Finances webpage, which was developed with the valuable contributions of the Financial Wellness Advisory Committee.
Upcoming CF Circle: If you would like to discuss your experiences navigating the financial impact of CF with peers, join the CF circle on July 15.
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Adult Advisory Council Members
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We are pleased to announce the newest members of the CF Adult Advisory Council (AAC)! The council is a rotating group of adults with CF who lend their voices to convey the hopes, needs, and aspirations of the CF adult community by tapping into the strengths and expertise of other community members. These volunteer leaders will continue to serve as reviewers for Impact Grants and provide timely feedback on a variety of projects, including how the CF Foundation can better partner with people with CF on key programs and events, such as the Volunteer Leadership Conference. Congratulations to the following six members who will join four other adults with CF to serve on the council for a three-year term.
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Community Voice Annual Report
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In case you missed it, our latest Community Voice annual report is now available – and this year, it covers all of the exciting projects you contributed to in 2024 and a celebration of 10 years of community impact, as we highlight Community Voice’s 10-year anniversary! Thank you to everyone who has helped shape research, care, and community programs over the last decade. We hope you enjoy seeing the difference you have made play out on these pages!
We also appreciate the dozens of Community Voice members who shared quotes and photos to bring this report to life! Check it out and hear from others in the program on how they’ve seen their time and efforts make a real difference for people with CF and their families.
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Celebrations in the Month of June
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Disability Pride Month
We are delighted to recognize July as Disability Pride Month. This month is a time to honor the achievements, contributions, and experiences of people with physical, neurodivergence, invisible (and undiagnosed), psychiatric, and sensory disabilities in the CF community. We invite you to use this month to celebrate the experiences of people with disabilities and explore ways to champion inclusivity within the CF community so that everyone feels welcome.
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Over the coming weeks, Community Voice will share opportunities to participate in projects related to clinical research, male reproductive health, and more!
Protect Medicaid Access
Congress is moving forward with a reconciliation package that includes changes to Medicaid and the marketplace that will cause people with CF who rely on Medicaid to lose their health coverage. For people with cystic fibrosis, losing coverage isn't just a financial setback; it's a health crisis waiting to happen. The One Big Beautiful Bill Act contains several provisions that will add red tape, increase costs to patients, and restrict states’ flexibility. Read more about the proposed changes in the Foundation’s recent letter to U.S. Senate and join the thousands of CF advocates calling to urge their members of Congress to vote NO on any package that includes cuts to health care.
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Sharing Insights & Experiences Through the CF Community Blog
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Check out these recent blog posts by Community Voice members! Community Voice currently has 206 members who have written 446 posts since the CF Community Blog launched in 2015.
Interested in sharing your story? The CF Community Blog wants to hear from you.
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