Dear Community Voice member,

Welcome to the February 2022 edition of Monthly Results Updates!

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, browse previous editions.

We are pleased to announce that the recently published article, “Cystic Fibrosis Foundation otolaryngology care multidisciplinary consensus recommendations,” is now available on the International Forum of Allergy & Rhinology's website. Developed for use by ear, nose, and throat (ENT) and CF programs, these clinical care guidelines make recommendations on the otolaryngologic care for individuals with CF.

Congratulations to Eliza Callard, Lisa Hamburger, and Meagan Helmick who served on the ENT Guidelines Committee, and to every Community Voice member who was involved in developing these guidelines. From participating in a survey to share your insights about the scope of how people with CF receive referrals and treatment for ENT care, to providing additional feedback on the guidelines during its public comment period, thank you for working to comprehensively address ENT needs for individuals with CF.

Learn more about the Foundation’s current guidelines and guideline development process.  

Community Voice is proud to recognize February as Black History Month and celebrate the legacy, achievements, and contributions of Black Americans in their families, workplaces, and communities. We are committed to hearing from all people with CF and their families, and proud to celebrate Black History Month and highlight the Black Voices continuing to share their insights and perspectives to inform CF Foundation's programs, initiatives, and research. 

Tiffany Thornton, a member of the External Racial Justice Group and a Community Voice Member

Each year on February 28, we celebrate Rare Disease Day, an annual, patient-led, global movement that brings together 300 million patients, families, caregivers, and advocates who are living with or have been affected by a rare disease. This year, participants were encouraged to raise awareness of and inspire change for more than 7,000 known rare diseases, including CF. Learn more about this movement and ways to still get involved.

Researchers from the University of Washington announced the release of a new Patient-Centered Outcomes Research (PCOR) Training Manual for the CF community. PCOR engages patients and caregivers to participate as equal partners on CF research teams throughout the research process, from the development of research questions to the dissemination of the findings. With the support of six Community Voice members who reviewed and provided feedback on its content, clarity, and design, this step-by-step guide explains how CF researchers can include and authentically collaborate with patients on their teams across all aspects of research design and implementation. Thank you to the individuals below who participated in this year-long project to help shape this resource!

In 2018, the Infection Research Initiative (IRI) was launched to improve detection, diagnosis, treatment, and outcomes of infections for people with CF. Building on an existing, broad infection research portfolio, the Foundation aimed to commit at least $100 million in new funding from 2019 through 2023 to meet this mission. Approaching the halfway mark of the initiative’s commitment, the CF community participated in a survey to provide feedback on how well the Foundation communicated about infection research, the initiative’s research priorities, and its robust infection portfolio.

Results from the survey revealed that while infections for most of the respondents have changed due to taking Trikafta, there is still a need to focus on the development of novel therapies to treat infections. These results have helped the Foundation prioritize its goals for the future of the IRI beyond 2023, and we are also pleased to announce that the initiative has already surpassed the initial $100 million in research funding nearly two years ahead of its goal. Thank you to everyone who participated in this survey!

You can read more from Community Voice member Gebriella Balasa about why infection research remains a top priority as a person with CF. 

Touching on all aspects of life with CF, 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 to more than 1,500 members in Community Voice and received 19 quality applications. Congratulations to the six individuals below who will join five other Community Voice members as a part of this group!

Throughout 2021, we continued to work alongside all of you to advance our work in research, care, and community support programs. To help the CF Foundation prioritize how to improve Community Voice, an annual feedback survey was conducted. Results from the survey were used to help identify new strategies to enhance the engagement and recognition of members while informing the program’s priorities for 2022. Thank you to the nearly 90 members who shared their feedback. Be on the lookout for our 2021 Year in Review Report which will highlight many of the group’s major achievements from the past year!

Lo invitamos al webinar en español el 22 de marzo a las 7 p.m. ET (hora del este) en donde hablaremos sobre la genética de la FQ y responderemos sus preguntas. Inscríbase para participar en directo, o para recibir la grabación después del evento.

We invite you to a webinar in Spanish on March 22 at 7 p.m. ET where we will talk about CF genetics and answer your questions. Sign up and participate live, or receive the recording after the event. Please feel free to also share with your social networks!