Community Voice: Monthly Results Update

September 2022 Edition

Dear Community Voice Member,

Welcome to the September 2022 edition of the Monthly Results Updates!

In these digests you will learn about the impact Community Voice is having through members participation in recent opportunities. If you would like to read about past projects, browse previous editions.

2022 CF FamilyCon: Register Today!

No matter how folks are connected to cystic fibrosis, there is a place for them at CF FamilyCon, a free virtual event to come together, share stories, and discuss aspects unique to life with CF. Registration is now open for the fourth annual CF FamilyCon held on October 21st and 22nd and will include virtual small-group discussions, social opportunities, keynote presentations, and more. We would like to congratulate the community members that served on the event planning committee for leading this year’s event!

STRC Steering Committee Recruitment

The CF Foundation’s Success with Therapies Research Consortium (STRC) facilitates the clinical study of behavioral interventions to help sustain daily care and improve CF disease self-management, while optimizing health outcomes and quality of life.

STRC investigators work closely with people with CF and their family members in identifying interventions to design and test for these clinical studies. Steering Committee members provide feedback to STRC investigators about interventions, protocols, and study conduct. The Steering Committee also makes decisions about the overall operation and policies of the STRC. For more information about the current studies underway in the STRC, view the program’s article on cff.org. We would also like to congratulate the two Community Voice members below, as well as Mary Leigh Morrison, who recently applied and were selected to join this committee for a three-year term.

Genetic Therapies Workgroup: FAQ & Glossary Feedback - Update

As part of a suite of new educational materials, the Genetic Therapies Working Group created a one-page glossary of key terms related to genetic therapies, including RNA therapy, gene therapy, and gene editing. A small subgroup of working group members, including CF physicians and adults with CF, created the first draft of the glossary. Community Voice members then provided feedback on the terms and definitions during two focus groups held in July. The glossary will be printed as a companion to the genetic therapies infographic, which was developed with Community Voice input, and is intended to provide an additional level of detail beyond the basic concepts covered in the infographic.

Wellness Message Testing

Wellness is a vital aspect of everyone’s lives, and is very important to maintain. The Foundation has been working to strengthen access to existing wellness resources for the CF community as well as analyze gaps in current wellness offerings. In June, a survey was deployed to Community Voice members to better understand how the community thinks about wellness and ensure that the way we talk about it reflects the community’s experience and perspectives. Results from this survey showed:

1. Enthusiasm for wellness and attention to overall well-being for people with CF.
2. Positive reaction to wellness being defined in a way that is broad and acknowledges that wellness is highly personal and looks different for each person.
3. The proposed definition of wellness is missing specific references to health, and the words “intentional” and “activities” do not resonate with everyone.
4. Barriers to wellness in a few primary areas: financial burden, insurance barriers, and mental health.

With the information learned through this survey, how we talk about wellness will be refined, and specific language will be developed to better describe programs, information, and opportunities the Foundation offers to support well-being. Thank you to everyone who shared their insights on this important work!

Community Voice is proud to recognize September 15 through October 15 as Hispanic Heritage Month and celebrate the legacy, contributions, and achievements of the Hispanic/Latino community. This celebration aims to highlight the rich diversity of the Hispanic/Latino CF community and Community Voice membership.

During Newborn Screening Awareness Month, we continue to assess how cystic fibrosis newborn screening is conducted across the U.S. and what opportunities there are to ensure that every infant born with CF, regardless of race, ethnicity, mutation, or location, has the best health outcomes possible. 

UPCOMING & OPEN OPPORTUNITIES

Keep an eye out for upcoming opportunities in the next few weeks to share your perspectives and experiences on topics such as autoimmune disease in CF, and many more!

In the meantime, participate in some open opportunities today!

Sharing Insights & Experiences Through the CF Community Blog

Check out this recent blog post by a Community Voice member! Community Voice currently has 158 members who have written 357 posts since the CF Community Blog launched.

• Making Lifelong Friendships with Other Moms of Kids with CF by Margarete Cassalina

• Bring CF Awareness to the Hispanic Community by Lili Hunt

   

• Why I Had to Take a Break From Fundraising to Maintain My Son’s Privacy by Megan Neville

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

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