Dr. Drucy Borowitz was the guest speaker at the 37th Annual Kit Taylor Memorial Lecture on March 28, 2017. She discussed recent developments at the Cystic Fibrosis Foundation (CFF) in her presentation entitled “Use Your Voice and Use It Often: CFF Community Partnerships.” Thanks to the Rochester CF Center staff and the URMC technical support team, you can watch the full lecture using the following link:
About 25 minutes into the talk, Drucy talked about the BreatheCon initiative. She ran a video put together by the BreatheCon committee; however, that video is not visible in the linked presentation. You can view a report on BreatheCon 2016 using the link below then click the pictures at the top of that page to run the video.
After serving as the Director of the Buffalo CF Center for many years, Drucy was named a vice-president at CFF to lead their new Division of Community Partnerships. The basis for this evolution in service was laid in the organization’s updated mission statement. Significantly, the opening of the statement is unchanged: “The mission of the the Cystic fibrosis Foundation is to cure cystic fibrosis.” Drucy’s presentation was focused on the activities spawned by the recent extension to the mission: “and to provide all people living with cystic fibrosis the opportunity to lead full, productive lives.”
There are two companion aspects in the steps being taken to fulfill the expanded mission. First. through Community Partnerships, CFF wants to gather the wisdom obtained through the life experiences of those living with the disease. Second, CFF wants to embed that wisdom in every aspect of its operations; especially in programs that will share the accumulated wisdom across the CF community.
Drucy devoted most of her time to describing three initiatives launched through her division: peer-to-peer mentoring, on-line events and Community Voice. Watch the video for full information on these initiatives. Here’s the tease:
- A pilot program for adult peer-to-peer mentoring was launched in 2016. Application processes were used to identify individuals living with CF both as mentors and people seeking a mentor resulting in 64 trained mentors matched with 76 participants. Given the glowing feedback on the pilot, plans for expansion in 2017 include (1) availability to all adults in the US and (2) focus on the transition to the adult world.
- BreatheCon was a grand experiment in providing a virtual interactive conference by and for people living with CF (watch the video noted above). While CFF provided significant support in developing and managing the technology, the planning, delivery and attendance was all handled by individuals living with CF. The excitement generated by the 2016 event led to plans for three events in 2017: two single-topic discussions and another two-day conference. The dates have been added to the CFFC calendar; details will be shared as they become available. CFF is also working on packaging the technology so that other CF organizations can produce their own virtual conferences.
- Community Voice is a rebranding of the CF Adult and Family Advisors group. Community Voice provides the opportunity for people affected by CF to take an active role in shaping the resources that are being developed for them and the rest of the CF community. There are a variety of options that accommodate different levels of involvement: surveys, focus groups, committees and working groups. You can further explore this program at: https://www.cff.org/Get-Involved/Community/Community-Voice/
CFFC is excited about the evolution at the Foundation demonstrated by the Community Partnership initiatives. We look forward to building a collaborative relationship to help bring those benefits to the local CF community.