Community Voice: Monthly Results Update
October 2023 Edition
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Dear Community Voice Member,
Welcome to the October 2023 edition of the Monthly Results Updates!
In these digests, we share the impact Community Voice members are making through participation in recent opportunities.
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.
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Clinical Research Executive Committee
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The Community Voice Spotlight is back! In this spotlight, we share the experiences of Community Voice members who are currently serving on committees and the impact they have for every person affected by CF. In this edition, we highlight the perspectives of three Clinical Research Executive Committee (CREC) members who provide scientific leadership for the CF Foundation's Therapeutics Development Network (TDN). The CREC is responsible for establishing therapeutic priorities for CF Foundation-sanctioned studies, reviewing and assigning a strategic fit rating for protocols conducted within the network, reviewing network activities, and overseeing network structure and governance.
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Why did your committee decide to include community members?
George Retsch-Bogart: Over time we saw how the CF Foundation was expanding involvement of community members in nearly all aspects of its work. We were seeing the benefits of Community Voice at many levels in the development and review of clinical study protocols, and the growth of ResearchCon, so we looked hard at where the TDN could open other doors to the community. Because the CREC made decisions on which clinical trials would be sanctioned for conduct in the network and considered their priority, we realized that this was a place where the community perspective was greatly needed. The CREC’s decisions have had a major impact on the drug development pipeline and other clinical research programs funded by the CF Foundation.
What do you wish the CF community knew about the CREC?
Will Corcoran: There is a lot I wish other CFers and their families knew about CREC. Mainly, I wish people could witness the level of thoughtfulness and effort that committee members have in their work to advance CF research. People on the committee take their job seriously, they come prepared to share their skills and experiences while recognizing the privilege to not only to be on the committee but working on behalf of CFers and progressing CF science. Also, as someone ineligible for a modulator, I was pleasantly surprised by the amount of conversations and work toward the need for life-changing drugs for the population of us who are not taking modulators. Overall, being a part of the committee provides me with a lot of hope for the future of CFers.
What have you learned about CF Clinical Research, including the TDN’s role and the CREC’s responsibilities?
Tré LaRosa: I have learned that there is an extraordinary amount of discourse and discussion that goes into every study. I have also realized how much inspiring, thoughtful, and intentional leadership there is at the network and at every site. In addition, I have learned that protocols go through multiple iterations and committees due to the community’s (patient, research, and medical) input. Ultimately, the TDN and CREC have played a fundamental role in advancing therapeutics for the community, and these two bodies will continue to play a fundamental role until genetic therapies and a cure are approved for the CF community.
How are you using your voice as a member of the CREC?
Will Corcoran: As a member of the CREC, it is critical that I hear what is top of mind from other CFers such as key needs, interests, and thoughts regarding the status of CF research. Being that Tré and I are only two people, we cannot hold all the identities that encompass the CF community, but we do work diligently to ingrain ourselves in the community, whether it’s staying active on online CF pages like Facebook and Reddit, reading news articles from the CF Foundation and CF News Today, or speaking directly with my mentees and mentors with CF.
Tré LaRosa: While the CREC actively reviews every protocol, I offer a personal perspective on how I would feel if I were invited to join the respective study. Along with my own personal perspective, I make a concerted effort to impart to the CREC some key considerations about the patient perspective and experience, such as the burdens of care, the challenges of not receiving reimbursement (or compensation) in a timely manner, and the different risks patients may be willing to take depending on their circumstances. The goal of this is to educate CREC members on the depth and breadth of the overarching patient experience to enable them to review subsequent protocols with this knowledge. Not every patient is going to view everything the same, however, our shared experience requires us to speak on behalf of others.
Why is it important to include the community on a clinical research-related committee like the CREC?
Will Corcoran: Without representation from someone with CF on the CREC, the committee would have a difficult time incorporating the perspectives of CFers, which is critically important as we are impacted most by decisions made by the committee. The drugs and therapies that the CREC is involved in advancing will someday be taken by CFers and for them to be effective as possible, CFers need a seat at the table to advocate for their needs and share thoughts. Research is collaborative- the scientists, physicians, coordinators, and CFers on the committee work in unison to develop proper protocols which CFers play a vital role in.
Tré LaRosa: There is a saying that I’m really fond of and that motivates all of my patient advocacy efforts: “Nothing about us without us.” This phrase is particularly important in the realm of clinical research, especially as patient-focused drug development becomes more common. This approach centers the patient experience at the very early stages of research, even beginning before clinical trials begin. To that end, it’s crucial that patients are represented on all committees, especially ones that have such as significant of a charge as the CREC, where Will and I work to ensure patient concerns are centered in every conversation.
Was there initial hesitation to involving community members in this space? If so, how has that changed since working with community members on the CREC?
George Retsch-Bogart: Although it took far too long for us to recognize the need to have community members active in the CREC, when the idea was proposed to the committee there was unanimous and rapid agreement that we needed to move forward immediately. Now, just one year later we can’t imagine the committee carrying out its work, having discussions and making decisions about CF research without Tré’s and Will’s perspectives, critiques and votes. Their input, experience and honest appraisals are invaluable and we as a committee are far better at meeting our mission.
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Recommendations for Equity, Racial Justice, Diversity, and Inclusion - Update
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As part of the CF Foundation’s efforts to address inequities in experiences and health outcomes for people of color with CF, the External Racial Justice Working Group announced finalized recommendations in two key areas in February 2023: Health Equities and Outcomes, and Diverse Workforce Development. Last week, the CF Foundation’s working group finalized its recommendations on the third and final key area: community.
The Community Recommendations update provides information on the themes and goals the working group identified to foster a more inclusive community, including representation, support programs, training, and communications informed by the lived experiences of Black people living with CF. It also describes next steps, including the development of roadmap for implementation of work in the three key areas.
Learn more about all of the CF Foundation’s recommendations for equity, racial justice, diversity, and inclusion in our brochure. You can find more information about our commitment to these topics and subscribe to updates specifically in this area on our website.
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Community Voice Spotlight Week
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The CF Foundation spotlighted the Community Voice program during the week of October 15-21 to bring in new voices to the program. Community Voice appeared on the Foundation homepage, social media channels, chapter communications, and the national Together email. We welcomed 18 new members to the program during spotlight week!
Thank you to everyone who participated during the celebration and shared their experiences with the program. If you haven't already, check out the Community Voice Outreach Guide to share your story and help new people find and connect with Community Voice!
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Community Voice Impact Grant Awardees
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The CF Foundation's Impact Grants program provides guidance and funding to individuals or nonprofits that actively work with and empower the cystic fibrosis community. We are excited to share with you the community-led projects that were selected as 2023 Impact Grant Awardees.
2023 Impact Grant Recipients
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BreatheStrong+ by Miles for CF: This motivational, points-based program encourages healthy habits for those with cystic fibrosis including exercise, connecting with others in the CF community, and self-care. To learn more and register, visit the BreatheStrong+ website.
- CF Community Footprints is a virtual dance program with weekly sessions for people with CF and their families focused on movement, writing and reflection, and community connection; culminating in a collaborative dance piece. Note: Registration for this program will launch in Fall 2023 on the
Ballaro Dance website.
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CF Senior Saturday Meet and Greets* is a virtual meeting space for people with CF ages 40+ to connect, exchange experiences, and access age-specific resources; encouraging them to become leaders in their communities, promote positive aging, and help inform policies and programs that meet the needs of older adults with CF. For more information, visit the Aging with CF website.
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Spit it Out (A CF Storytellers Training)* is a virtual public speaking program that uses trauma-informed training to help people with CF share their stories. Speakers will learn how to familiarize themselves with their own story, structure their story to connect with others, and deliver their story with power. To apply, complete this interest form.
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The Salty Pen: A CF Writing Group* is a virtual program for all writers with CF who want to achieve their personal writing goals and have the opportunity to collaborate, find support, discuss, and solicit feedback on their writing. To enroll, complete this intake form.
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Turning Points Coaching for Adults with CF* is a group coaching program designed to support adults with CF as they navigate life changes since starting modulator therapy. The program aims to help participants process identity shifts, articulate goals, build community, and take steps toward the life they’ve imagined. For more information, visit the program’s website.
- Young Adult Group Program* is a monthly mindfulness program that provides young adults with CF the support and strategies they need to address the unique challenges of life with their disease. Note: This program will launch in Fall 2023
*These programs were designed by Community Voice members.
Learn more about the CF Foundation’s 2023 Community Grant Awardees, including the Impact Grant awardees above and recipients of Community Support Grants. Congratulations to the awardees for their work in creating these wonderful programs that support individuals through all aspects of life with CF.
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Celebrations in the Month of November -
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Native American Heritage Month
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Next month, Community Voice is proud to recognize Native American Heritage Month and celebrate the legacy, achievements, and contributions of Native/Indigenous Americans in their workplaces, and communities. We invite you to take some time next month to explore resources that can help you develop a deeper understanding of the Native/Indigenous American community and their experiences.
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We know that many living with CF are experiencing significant changes in their health. As some live longer, their needs are changing and may become increasingly complex. For others, their health may not have changed dramatically, so the care they receive may need to be sustained.
To understand how the care that is provided at the care centers the Foundation accredits across the country can better meet these needs, we are asking people with CF, their families, and care team members to complete the Adapting CF Care survey.
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| Keep an eye out for upcoming opportunities in the next few weeks to share your perspectives and experiences on topics such as sexual reproductive health in males, prenatal and preconception genetic counseling, and more.
In the meantime, participate in some open opportunities today!
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Sharing Insights & Experiences Through the CF Community Blog
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Check out this recent blog post by a Community Voice member! Community Voice currently has 171 members who have written 384 posts since the CF Community Blog launched.
Interested in sharing your story? The CF Community Blog wants to hear from you.
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