Introducing the FAdult Council

In late 2017, for the first time ever, there were more adults living with Fanconi anemia than children living with FA (according to FARF’s registry). This reflects an emerging population of adults living with FA that was not present even just a decade ago. This growth in the adult population could be attributed to the fact that positive outcomes of stem cell transplants have dramatically increased over the last 20 years. As a result, more children are reaching adulthood.

In addition to the normal challenges one faces when becoming an adult, like working and learning to live independently, adults with FA are confronted with a unique set of challenges. Some of these include transitioning complex healthcare from parents to the individual, the lack of experienced FA clinicians who specialize in adult care, issues with fertility, and the increased likelihood to develop solid tumors.

To respond to these challenges, and to better understand other issues facing this population, earlier this year FARF formed an FA Adult Council, or FAdult Council. Currently comprised of seven adults with FA, the group is “a permanent advisory council to provide ongoing support to the FARF staff and Board of Directors by providing informed input as FARF plans new activities or develops policies and procedures related to FAdults” (FAdult Council purpose statement). The council determined their top objectives:

  • To provide advice and ongoing support
  • To help people with FA have a voice
  • To empower all adults with FA as one community
Five members of the FAdult Council at the 2019 Family Meeting (from left, Matt, Jack, Duncan, Amelia, and Angela)

Each year, the council meets three times in person, three times via webcam, and on other occasions as needed. In their first few meetings, members outlined the role they seek to fulfill as a council:

  • Act as a bridge between other FAdults and FARF
  • Support other FAdults in their lives
  • Encourage and inspire kids who have FA by setting examples for success and reminding them they are not alone
  • Provide counsel and feedback to the FARF Board of Directors and staff
  • Interact directly with FA families to offer advice or share experiences
  • Help FARF create a guidebook specific to adults living with FA
  • Serve as FARF Ambassadors at events, meetings, fundraisers, and conferences.

At the 2019 FA Family Meeting in June, five council members held a panel discussion for parents as well as a support group for teens and kids with FA. The council has also been instrumental in developing the 2019 Meeting for Adults with FA in September.

If you’re interested in getting in touch with any of the council members, please let us know so we can connect you.

2019 FAdult Council Members

Matt Pearl, co-chair

Jasmine Bennetsen, co-chair

Mary-Beth Johnson

Angela Bedoya

Duncan Nunes

Jack Timperley

Amelia Hawkshaw

Categories: Announcements

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