Monthly Results Update

Dear Community Voice Member,

Welcome to our second edition of the Community Voice: Monthly Results Update!

In these digests you can learn about recent opportunities that Community Voice members have participated in, the feedback, ideas, and insights we gathered, and the next steps or impact of each project. If you have any questions or feedback on how we can improve these digests, please contact us at communityvoice@cff.org.

Best,

The Community Voice Team

Publication Announcement:

CF Lung Transplant Referral Guidelines

We are pleased to announce that the "Lung Transplant Referral for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Consensus Guidelines" is now available on The Journal of Cystic Fibrosis’ website. Several members of Community Voice were involved in the development of these guidelines, from serving on the committee, giving input in an ad hoc focus group, and providing additional feedback during the public comment period. Developed to be used by care centers, the guidelines provide referral recommendations on the timing of individuals with CF for a lung transplant. Content about this guidelines will be posted to cff.org in the coming weeks. All of the CF Foundation's current guidelines can be found here and information on the guideline development process can be found here.

Infection Research Steering Committee

Recently, the CF Foundation created a committee to help steer the Infection Research Initiative. This group is charged with reviewing the infection research portfolio, identifying gaps and research questions, and recommending infection research priorities for the CF Foundation. A request to apply for the committee was sent to over 900 people in Community Voice and the committee received 53 applications, which is the most we have ever seen. The committee leaders reviewed applications and hosted interviews with top candidates to ensure that different perspectives and experiences from the community would be reflected as committee members. The group recruited two adults with CF and two parents of people with CF to serve for a 2-3 year term, and onboarding for these committee members will begin in mid-April. To learn more about the Infection Research Initiative, click here.

ResearchCon 2019

On Feb. 28, nearly 700 people participated in ResearchCon, the first virtual event dedicated to cystic fibrosis science and research. The event brought together 18 clinicians and researchers, who presented the latest on infection research, alongside 12 community members, who discussed their personal experiences with infections. A committee of 19 members from Research Voice planned the event with input from a Community Voice survey alongside clinicians and researchers.

Want to get involved with CF research projects? When you join Research Voice, you’ll receive special training and have a chance to be more involved in research initiatives.

Female Mentor Recruitment

CF Peer Connect, the CF Foundation’s peer support program, facilitates one to one virtual connections within the CF community to discuss shared experiences and life transitions. There has a been an increasing need for women looking for support around the topic of “aging with CF”. The program recently recruited women in Community Voice who have CF and who are over the age of 50 to become mentors to meet this need. To learn more about the program and request a mentor, click here.

Care Center Survey

The CF Foundation conducted a survey with clinicians, researchers, people with CF, and their families to learn about the challenges they currently face and what they are concerned or excited about in the future - especially as it relates to CF care. These insights are now being used to inform how the CF Foundation will work to meet the evolving needs of people with CF over the next five years and to improve the health and lives of all people affected by cystic fibrosis. Click here for a sneak peek of some of the key themes that emerged and stay tuned for the full results in the coming months.

Substance Misuse Information on cff.org Survey

The February edition of the Monthly Results Update included an update about the Community Voice focus group that helped to inform content around substance misuse on cff.org. The survey that followed helped the CF Foundation evaluate the effectiveness of the content and need for any potential enhancements. Click here to view the feedback we received from the survey, which will be used to update the content on cff.org in the upcoming weeks.

Still open for participation:

Nebulizer and Compressor Accessibility Survey

The CF Foundation has heard through Compass and care teams that significant barriers exist for patients to get nebulizer compressors that are sturdy enough to handle the inhaled medicines that are needed for CF care. It has also been reported that problems exist with getting enough nebulizer cups. A team has been formed that is working to identify and address these challenges. If you are an adult with CF or a parent of a person with CF, please consider taking the time to answer the survey below. Your answers will help identify how to help address issues/barriers people living with CF experience with this type of respiratory equipment.

If you are interested in participating in the survey, please click on the button below and complete the survey by Monday, April 8th, 2019 at 11:59 p.m., ET.

Complete Survey

Invite others to join Community Voice by sending them to cff.org/CommunityVoice.

For questions or concerns, please contact the CF Foundation's Community Partnerships department at communityvoice@cff.org.

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