Community Voice: Monthly Results Update

August 2024 Edition

Dear Community Voice Member,

Welcome to the August 2024 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:

• Results from the Wellness in the Modulator Era (Well-ME) Study
• Updates on both the Care Model & Pain Management Public Comments
• Initial Findings from the PRIDE CF Brainstorm on LGBTQIA+ Experiences with CF
• Selected sessions from the NACFC Livestream Session Survey
• Recipients of the 2024 Impact Grants & Community Support Grants

All Community Voice projects undergo our vetting process to ensure they have a positive, clear impact on the CF community and aim to engage as many diverse voices as possible. While some projects may take time to provide results or an outcome, they are always shared here. If you would like to read about past projects, browse previous editions.

Wellness in the Modulator Era (Well-ME) Study Results

The CF Foundation and researchers at Dartmouth College surveyed adults living with CF and parents of children under 18 with CF in summer 2022 to better understand how modulator therapies impact well-being.

The Well-ME study found that people taking a modulator therapy report substantial improvements in physical and social wellness, and improved CF care experiences. Results also showed that people who are ineligible for a modulator or are not taking one may need more support. In contrast, mental well-being remained a significant challenge for many people with CF, with one-quarter reporting worse mental well-being. For more information, see the full publication online in the Journal of Cystic Fibrosis (July 2024).

Thank you to the 900 people – including many Community Voice members – who participated in the Well-ME survey and contributed to growing knowledge around how modulators relate to quality of life and mental well-being.

Public Comment Care Model & Pain Management - Update

Public Comments on CF Care Model

In April, the CF Foundation invited people with CF, families, and care team members to review and provide comments on two position papers (or draft guidance) related to the CF care model:

• One position paper focuses on the manner and the frequency in which care is provided through in-person clinic visits and telehealth.
• The other position paper focuses on the makeup of the care team, including which roles should be part of the core care team, which are essential partners, and which are trained and trusted referrals.

A record number of responses were received, including responses from more than 79 people with CF and their family members. Thank you to all those who took the time to provide thoughtful feedback on the evolving care model. A committee of CF clinicians, adults with CF, and parents of people with CF reviewed all of the responses and submitted revised versions of the position papers for expected publication this fall. We will share links to the publications and related NACFC sessions as they are available.

Public Comments on Pain Management Guideline

In May, the CF Foundation invited people with CF, families, and clinicians to provide input on a draft guideline titled, "Addressing Pain in People Living with Cystic Fibrosis: A Cystic Fibrosis Foundation Evidence-Informed Guideline.” The feedback received during this public comment period will ensure that recommendations guiding the care of pain in people with CF are actionable. Thank you to all those who took the time to review this manuscript and for providing thoughtful feedback on this important topic, including 40 people with CF and their family members. The guideline committee (CF clinicians, a pain specialist, adults with CF, and the parent of an individual with CF) has reviewed all of the responses and revised the manuscript. They are currently working towards submission for publication this fall.

Experiences and Priorities of LGBTQIA+ People Living with CF (PRIDE CF)

Researchers are exploring how both having CF and being a member of the LGBTQIA+ community may impact adult health outcomes as part of the PRIDE CF initiative.  In early 2024, 39 community members and clinicians participated in an online brainstorm, responding to the prompt: “Things that people should know about the experiences of LGBTQIA+ people with CF are...”

Participants then sorted the collected statements into categories and rated them based on whether they agreed, their importance to people with CF who are members of the LGBTQIA+ community, and their importance to future research.

• The statement that was rated as most important to LGBTQIA+ people with CF was: LGBTQIA+ people with CF want to receive the same validation, respect, and care as other patients.
• The statement that was rated as most important for future research: There isn't enough information for people with CF who are seeking gender-affirming care (hormones, binding practices, surgeries, etc.) and the impact on our health.

Results from this study will be presented in September at the North American Cystic Fibrosis Conference (NACFC) and will ultimately inform the development and testing of interventions and materials to improve health for LGBTQIA+ people with CF. Notably, this is one of the first studies to investigate the impact of being LGBTQIA+ on a person with any chronic disease. We would like to thank Community Voice members for their participation in the PRIDE CF initiative!

NACFC Livestream Session Survey Results

The CF Foundation conducted a survey to learn which CF research and care topics the CF community would want to watch as a live online broadcast from the 2024 NACFC. The survey was shared with Community Voice members and the CF Foundation’s Adult Advisory Council (AAC). One hundred thirty-six members of Community Voice and nine members of the AAC completed the survey! Below you can find the sessions that were voted to be livestreamed at this year’s NACFC:

September 26 from 2:30PM-4:30PM EDT

• S03 - Golden Girls: Care and Considerations for the Aging CF Female
• S10 - Your Case: Airway Clearance vs. Exercise in the New Era

September 27 from 2:30PM-4:30PM EDT

• S19 - Fragile State? Bone Health & Vitamin D
• S23 - Updates in CFTR Genetics

September 28 from 10:15AM-12:15PM EDT

• S26 - From Just Surviving to Thriving: Unraveling the Complex Tapestry of CF & Aging
• S31 – Is the Price Really Right?: Keeping Innovations in CF Care Accessible

Note: All three plenaries will also be livestreamed. Many NACFC sessions are also recorded and will be available to view for free on the CF Foundation YouTube channel in late 2024.

Thank you to the members of Community Voice and the AAC for completing this survey and helping choose the sessions based on their relevance to those in the CF community. Check out the full schedule, including plenary topics, on the NACFC website. Registration for the virtual portion of NACFC is now open!

2024 Impact Grant & Community Support Grants Recipients

Throughout the month of August, the CF Foundation has been introducing the recipients of our 2024 Impact Grants — an inspiring and diverse group of projects dedicated to nurturing the mind, body, and soul of the cystic fibrosis community. These grants, along with the CF Foundation’s Community Support Grants, were awarded in consultation with two review committees (CF Foundation Adult Advisory Council & Community Support Grant Review Committee) of adults with CF who are members of Community Voice. 

In total, 17 community members participated in the review and recommendation of proposals for the 2024-2025 award year, resulting in the funding of four new Impact Grants and eight new Community Support Grants, in addition to the renewal of six Impact Grants for projects awarded last year. Funding from the grants allows services from these projects to be available to the community for free.

“To be part of the Community Support Grant review committee is such a special honor. I feel as though it is part of my calling. To be able to help organizations help CF patients improve their lives physically, mentally, and sometimes financially, is such a rewarding experience. I can think of no greater way to serve the CF community.”

– Brad Johns, Community Voice member and Committee Chair

The CF Foundation is grateful to all committee members for contributing their time and invaluable insights. Visit the Community Grant Projects website to view the complete list of projects that were funded this year. 

UPCOMING OPPORTUNITIES

Keep an eye out for upcoming opportunities in the next few weeks to share your perspectives and experiences by:

• Providing input on CF Foundation newborn screening guidelines
• Taking a survey to inform the CF Foundation’s Long-Term Strategic Plan (LTSP)
• Joining a focus group about modulator use during pregnancy, and more!

OPEN OPPORTUNITIES

CF Circles: Living as a Black Person With CF

The CF Foundation is offering a small group discussion for people with CF and caregivers (parents or spouses/partners of someone with CF) who identify as Black/African-American. During this event, you can find community, share stories, and get support.

Tuesday, September 17 at 7:00pm ET
This discussion is for people with CF and their family members (parents, caregivers, spouses/partners, siblings, etc.) who identify as Black/African-American. This event will be a 75-minute community support session, peer-led with CF Foundation staff present to assist with technology. Breakout discussions will be divided by connection to CF.

Please feel free to share this event with others you know who may be interested in attending.

Visit the CF Circles website to learn more about these small group discussions, including additional upcoming events. Please contact Kelsey Logan with any questions.

Sharing Insights & Experiences Through the CF Community Blog

Check out this recent blog post by a Community Voice member! Community Voice currently has 188 members who have written 418 posts since the CF Community Blog launched.

• Supporting My Wife Through Unexpected Health Challenges by Ray Poole

Interested in sharing your story? The CF Community Blog wants to hear from you.

4550 Montgomery Ave Suite 1100 N | Bethesda, MD 20814 US

Manage your preferences

Opt Out of this mailing list | Opt out of all CF Foundation emails

Got this as a forward? Sign up to receive our future emails.
View this email online.

This email was sent to .
To continue receiving our emails, add us to your address book.