Use the Community's Voice
In Spring 2017, the Cystic Fibrosis Adult and Family Advisors (AFA) group will be known as Community Voice. This group has informed the launch of many committees and programs and seeks to continue sharing the perspectives of those living with cystic fibrosis. This group of more than 300 people with CF and their family members has become a valuable resource to provide insights and feedback to ensure that their unique perspectives inform work that can meaningfully impact the lives of those with CF. If you have a project that could benefit from the input of Community Voice, we encourage you to contact Kelsey Fredkin or Megan Bradley at cpartnerships@cff.org.
If you know a person with CF or a family member who may be interested in providing his or her unique perspective about CF care, research and quality of life, please direct them to CF Adult and Family Advisors to learn more and apply to join.
Getting Connected: Peer-to-Peer Mentoring for Adults With CF
A peer-to-peer mentoring program for adults with CF was launched in May 2016 for a 1-year pilot. Twelve “pilot site” care centers are participating in recruitment of mentors and peers. A 14-person advisory committee, which includes five adults with CF, provides feedback and strategic direction on a quarterly basis.
In this program, “mentors” are adults with CF (over the age of 18) who are willing to share their experiences on a range of life-management topics to support their peers through one-to-one virtual connections. “Peers” are also adults with CF over the age of 18 who are looking to learn more about a topic and are seeking support through connecting with a peer mentor. Mentoring connections take place via video calls, phone or email. Topics for discussion focus on managing life with CF and range from college transition, to starting a family, to managing work decisions, to considering lung transplant and more. These mentoring connections are based on experience sharing and are not intended as crisis intervention.
Currently, 49 mentors are trained and enrolled in the program and 64 matches have been made thus far. In 2017, the Cystic Fibrosis Foundation will evaluate and expand this program to reach all adults with CF who want to connect with a peer mentor.
For more information about the peer mentoring program or to inquire about bringing this program to your care center in the next expansion phase, please contact Aimee Jeffrey at peermentoring@cff.org.