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The CF Foundation has been closely monitoring the spread of the coronavirus (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. Please note that participating in Community Voice opportunities is always optional.
Dear Community Voice member,
Welcome to the June 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.
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A Special Farewell & Congratulations to Drucy Borowitz, MD:Senior Vice President of Community Partnerships at the CF Foundation
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A revered clinician and leader in the CF field, Dr. Drucy Borowitz has positively impacted CF treatment, care, and research for decades. For more than 25 years she served as the CF center director at the Women and Children's Hospital of Buffalo, and she continues to shape future clinicians as a professor of clinical pediatrics at the Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo.
Drucy joined the CF Foundation in 2016 to spearhead the Community Partnerships department. With her tenacity and dedication, she has championed the needs and perspectives of people with CF by recruiting a talented team that supports people with CF and their families, enables connections among them, and integrates their voices into the Foundation’s activities. Without her leadership, the Foundation would not have been able to establish many innovative community programs including Community Voice, virtual events including BreatheCon, CF Peer Connect, and Impact Grants.
Drucy will retire this month after working tirelessly to make a difference for the CF community. As part of her retirement, she will be able to spend more quality time with her husband Phil, two adult children, and two grandchildren.
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Drucy and Phil visiting Portugal in 2017
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Drucy and her two adorable grandchildren, Lewis and Margot
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Her legacy to find meaningful ways to support and partner with the community will continue through the work of this team. Please join us in congratulating Drucy on a well-deserved retirement!
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A Warm Welcome to Sue Sullivan, RN, BSN:
Senior Director and Department Head of Community Partnerships at the CF Foundation
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Sue with her husband Danny and two sons, Zachary and Wesley
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| This month, we would also like to welcome Sue Sullivan as the new head of the Community Partnerships department! Previously a Program and Nurse Coordinator at Oregon Health and Science University (OHSU), Sue is a dynamic and experienced nurse and care team leader with more than a decade of CF experience. Prior to her role at OHSU, Sue worked at Johns Hopkins for more than 15 years as an intensive care unit nurse, transplant nurse coordinator, and Adult CF Care center program coordinator. You may also recognize Sue from NACFC in 2019 when she was a panelist for the third plenary: “Evolution of CF Care: Innovation and Impact.”
Throughout her career, Sue has been a vocal advocate for the importance of embracing and enhancing partnerships between people with CF and those who care for them. At the Foundation, Sue will continue to build on this advocacy through the strength of the Community Partnerships department. Please join us in welcoming Sue to the CF Foundation!
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CF-Related Diabetes Multi-phased Project
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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. To help the researchers understand the community’s perspectives and needs surrounding CFRD-related education, CFRD devices, and priorities for future endocrine research, members of Community Voice participated in focus groups and a survey to share their insights. The perspectives of those with and without CFRD experience were collected, and the results from the survey were recently used to help shape the Research Overview: CFRD webinar that discussed current and upcoming studies aiming to improve CFRD diagnosis and treatment. The entire project’s results are now being analyzed and will be used to help advance CFRD education and support and inform research funding decisions. Stay tuned in late 2020 for an update on this project!
Also, make sure to check out the recent blog post from Community Voice member Meagan Helmick who shared how CFRD is the cloud in her Trikafta silver lining.
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CF Adult Advisory Council
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We are excited to announce the newest members of the CF Adult Advisory Council! This council is a rotating group of 12 adults with CF who lend their voices to convey the hopes, needs, and aspirations of the CF adult community. More than 20 highly qualified Community Voice members applied to fill its four open positions. The Foundation’s Board of Trustees recently approved the new members and their terms began in June. Congratulations to Ed Canda, Ella Balasa, Lydia Sand, and Somer Love who will serve on the AAC for a two-year term!
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CF Community Blog Editorial Board
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Touching on all aspects of life with cystic fibrosis, the CF Community Blog shares experiences, reflections, and stories from across the CF community. To help advise what content should be featured and identify diverse viewpoints on issues of interest to the community, the blog’s editorial board sent out a call for applications through Community Voice and quickly received more than 30 applications. We are excited to congratulate the following individuals below who will officially begin their role this month!
- Adriane De Moerloose
- Chad Salyer
- Erin Almenti
- James Albright
- Jen Bleecher
- Kade Hammes
- Lisa Stackhouse
- Meagan Helmick
- Michelle Herpolsheimer
- Misty Roussa
- Tara Goodwin
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Patient Registry Infographic Survey & Focus Group
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People with CF are continuing to live longer, healthier lives, and data from the Patient Registry supports this general trend. To reflect on the data the Registry has collected as of 2019, the Foundation developed an infographic that focuses on several topics relating to life with CF. Community Voice members shared their feedback on the infographic and what data they think was most important to include. Click here to see the final version of the infographic, which has expanded to incorporate this feedback and reflect on how the collective efforts of the CF community are helping more people with CF reach key life milestones.
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Writing for the CF Community Blog
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Check out these recent blog posts by Community Voice members! Community Voice currently has 115 members who have written 260 posts since the CF Community Blog launched!
Want to contribute to the CF Community Blog? Fill out this questionnaire.
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