|
|
The CF Foundation has been closely monitoring the spread of COVID-19 to evaluate the potential implications for people with cystic fibrosis and their families. Visit cff.org regularly for the latest resources and updates from the Foundation.
| |
|
Dear Community Voice member,
Welcome to the May edition of the Monthly Results Updates!
New to Community Voice? Welcome! In these digests you will learn about the impact Community Voice is having through recent opportunities that members have participated in. If you’d like to read about past projects the group has been involved in, click here to browse previous editions.
| |
Racial Justice Working Group
| |
The Foundation has been working to address racism and discrimination and deepen our understanding by listening to CF communities of color and leading researchers who are focused on health disparities. In those conversations, sobering evidence affirms that race impacts every aspect of an individual’s experience with CF. As we take action guided by these findings, it is critical that we continue to hear from diverse voices to better understand the unique needs and perspectives of people of color within the CF community and the ways race has impacted their care and sense of community. CF Foundation staff, clinicians, researchers, and community members have come together as part of the Racial Justice Working Group with the goal of addressing racism and discrimination as well as implementing meaningful changes in listening and education, recruitment, retention and career advancement, and health equity. A big thank you to the three Community Voice members below and Rena Barrow who have joined this group and will help ensure significant and lasting change in this area.
| |
“If my voice and experiences can help make it easier for anyone and we can all learn and grow to be better, then don't I have a duty to help make it happen?”
– Lathronia Jefferson
| |
If you would like to get more involved in this space, please contact Christina Roman at croman@cff.org.
| |
Mental Health Awareness Month
| |
Mental health is a vital aspect of life that includes our emotional, psychological, and social well-being which is important at every stage of life, from childhood and adolescence through adulthood. Hear from the CF community about their experiences surrounding mental health through the CF Community Blog and check out resources on emotional wellness here.
| |
Recording & Resources Available in English & Spanish:
Supporting Your Adolescent’s Mental Health During COVID-19
| |
In case you missed it, click here to watch the full recording of the Supporting Your Adolescent’s Mental Health During COVID-19 webinar. Hear from experts who discuss the range of emotions kids and teens may be experiencing during this time, strategies to support a child’s emotional wellness, and tips for talking to children about their emotions. Key topics from the webinar are also addressed through this resource that is available in English and Spanish.
Shout out to Cecilia Lozano, Miguel Rodriguez, and Sylvia Mazuera for reviewing the Spanish translated resource!
| |
Mental Health Research Prioritization Survey
| |
The CF Foundation's Clinical Trials team is collaborating with the Mental Health Advisory Committee to develop key research priorities for mental health in people with CF and their caregivers. This group conducted two surveys -- one for people with CF and their caregivers, and another for CF care providers and CF Foundation staff -- to gain insights from all key stakeholders. After collectively receiving more than 1,000 survey responses, a team of researchers and patient partners have analyzed a fifth of more than 3,000 open ended responses and aim to complete the analysis by summer 2021.
The survey results are being used to develop a mental health research priorities document that will be used to inform the CF research community on the needs and knowledge gaps to improve the mental health of people with CF. The mental health research priorities will be grouped into six areas of focus: impact of CF management on mental health, effect of CF on family dynamics, anxiety, depression/mood disorders, relationships of mental health and physical health, and the relationship of comorbidities and mental health. The document is planned to be completed in time for dissemination at the 2021 North American CF Conference. Please stay tuned for future opportunities to contribute to this work.
Thank you to everyone who participated in this survey and a special shoutout to Community Voice members Laura Tillman, Chris Kvam, Virginia Birnbaum, Melissa Shiffman, Tonya Hamilton, Katie Caul, and Xan Nowakowski who have been partners in this research!
“We've had a lot of great discussion this past year about how patient leadership in CF research projects matters for justice. It also matters for the quality of the science itself! Living with CF ourselves gives us unique insights on the implications of research data -- and a unique ability to translate this information into concrete recommendations for the clinicians who care for us."
- Xan Nowakowski, Community Voice Member
| |
Cystic Fibrosis Awareness Month
| |
Every May, the CF community comes together to help others learn about the disease, share personal stories, and unite behind our mission to find a cure for all people with CF. This year's campaign is called #FacesOfCF and we encourage you to share your unique experiences with life with CF.
Tell your CF story on social media using the hashtag #FacesOfCF and follow along on Facebook, Twitter, and Instagram. You can share your diagnosis story, what your treatment routine looks like, your experience with transplant, and so much more. For even more ways to get involved, visit our resource page on cff.org.
| |
The journey to motherhood for many living with cystic fibrosis can take different paths. Earlier this month, we celebrated all moms in the CF community, and the progress we have made for people with CF to have the title of "mom." Make sure to check out the video below which includes moms from Community Voice, and happy (belated) Mother’s Day!
| |
The Success with Therapies Research Consortium (STRC) recently held a two-day virtual workshop. The focus of the workshop was based on findings from the 2020 Community Input Project that was developed to help ensure that the CF community’s perspectives are included in future STRC research. From that project, the CF community identified mHealth as a top area of interest for the STRC to explore. Key stakeholders including CF Foundation staff, individuals with expertise in mHealth, and CF community members attended the workshop, including Community Voice members Shelby Luebbert, Ella Balasa, Chelsea Spruance, Dan Schulke, Haley Snider, Aimee Lecointre, Kathy Shannon, Julie Lazzara, Lynda Buzzard, and David Hansen. Thank you to these members for attending the workshop and informing the next steps of the STRC mHealth project!
mHealth (mobile Health): a term used for the practice of medicine and public health supported by mobile devices.
| |
PCOR Training Advisory Group
| |
Patient-centered outcomes research (PCOR) provides the opportunity for people and their caregivers to participate as equal members of research teams to ensure their voices are heard throughout the research process, from the development of research questions to the dissemination of the findings. The PCOR Training Advisory Group began a 7-month grant-funded project that involves developing a training manual that will teach CF community members and researchers how to engage in PCOR. Leaders of the group recruited members of Community Voice to serve on this group and provide feedback on the content, understandability, and design of the PCOR training manual. We are pleased to congratulate David Pruit, Kimberly Barberee, Lauren Vignola, and Michele Heath who will be joining Molly Pam as a part of this group!
| |
Open Opportunity: CF-Related Diabetes Scientific Workshop
| |
CF-related diabetes (CFRD) affects over 35% of adults with CF and is consistently ranked as a high-priority for research by the CF community. The CFRD Scientific Workshop, sponsored by the CF Foundation and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), is an online webinar that is open to the public and will be held from June 23 – 25, 2021. The purpose of this virtual workshop is to share basic and clinical research data surrounding CFRD disease mechanisms and treatment while identifying key research questions and knowledge gaps that will inform research priorities and potential future funding opportunities. Multiple aspects of CFRD will be discussed including the mechanisms of disease, prevention, treatment, and the effect of CFTR modulator therapy on glucose and insulin. Register for the workshop by clicking on the button below by Monday, June 14, 2021.
A special shout out to Community Voice members Meagan Helmick and Sharon Cray who will be speaking about their perspective of CFRD during the workshop!
| |
Sharing Insights & Experiences Through the CF Community Blog
| |
Check out these recent blog posts by Community Voice members! Community Voice currently has 139 members who have written 312 posts since the CF Community Blog launched.
| |
|
|
|
|
