As we continue planning for the 2026 BDSRA Annual Family Conference in Chicago from July 10-12, we are seeking volunteers to help shape a meaningful and supportive experience for our families.
We are seeking volunteers for the following committees:
- SIBs Committee – Planning programming, and connection opportunities for siblings
- Life Goes On (LGO) Committee – Supporting our bereaved parents
- Chicago Planning Committee – Assisting with ideas and conference logistics
- Grandparents Committee – Creating space and support for grandparents
- New Families Welcome Committee – Helping newly diagnosed and first-time families feel supported, informed, and connected
Committees will meet once a month starting the first week in March. The dates and times are TBD. If you feel called to serve as a point person for one of the committees, that would be greatly appreciated as well.
No prior experience is needed — just a willingness to collaborate and serve our Batten disease community.
Those interested should email Heather@bdsrafoundation.org and indicate which committee they would like to join.
