Dear members of our Batten Community,
We wanted to provide an update on the many board activities and initiatives in the last few months.
The Tragic loss of Larry McDonough was a most saddening moment for our entire community. Larry was a cherished pillar of the Batten Community for decades, serving on the board for many years, working tirelessly to fundraise for the BDSRA, volunteering on the Conference Committee this year, and volunteering to lead the 2027 Conference planning with his loving wife, Barb. We are heartbroken by his sudden passing and want to honor his memory in a meaningful way. We send love and support to Barb and her son Michael as they grieve their tremendous loss.
We owe it to Larry and the entire Batten Community to make the 2027 Family Conference our major priority. We had a truly amazing attendance at the 2026 family conference, and we keep all the interactions we had in fond memory. The planning for the 2027 conference is underway, slightly delayed with the sudden loss of Larry as the lead planner.
2027 BDSRA Family Conference: We are thrilled to announce it’s time to start your engines as we map our race to the 40th BDSRA Birthday! We are finalizing the details of the hotel contract; tune in to the September 27 Town Hall for more details! If you are interested in serving on the Conference Planning Committee, please let a Board member know.
Family Support Role. After an extremely productive year and successful job planning and executing the Summer Conference, Heather Dainiak has decided to step back from her duties and focus on family responsibilities at home. We are pleased to announce that Chris Hawkins, an active supporter of the BDSRA community, has offered to volunteer on a part-time basis to fill the role of Family Support! We are thankful to Heather for all of her service and commitment and are thrilled to welcome Chris into this interim role. Many of you know Chris for his active role on the 2026 Summer Conference Planning Committee, as moderator and host of some of the Grief Chats and Coffee Chats as well as a huge supporter within the community to other families. We thank Heather for all of her hours as an employee as well as a volunteer in producing a magnificent summer conference!
Rebuilding the BDSRA strategically, structurally, and financially. 2026 is the year for drastic restructuring and cost reductions to establish a more nimble, viable BDSRA to serve the Batten Community. We are now starting to see the impact of the changes we had to implement, and our expense ratio has stabilized to an acceptable level. The Board of Directors is committed to completing a strategic plan for BDSRA with a vision for the next 12 months and onward into 2030. The plan will continue to rely on our three main pillars: Family Support, Advocacy on all levels, and a re-centered Research focus on therapies and cures. Implementing this plan will include community input, community members volunteering in defined areas, and increased fundraising efforts.
The face of the BDSRA today and in the near-term. As the Board laid out in the February 15, 2026 Town Hall, individuals on the BDSRA Board are taking on many of the day-to-day operational roles formerly held by paid full-time staff. We appreciate the Batten community supporting us and being patient with us as we prioritize the most critical aspects of daily operations. Board members are not compensated for their time and take on these duties on top of their personal obligations including full time jobs, and full time parenting of affected and unaffected children.
We need you 👉🏻! To fulfill our mission going into the future! We need the entire Batten Community. Please continue supporting the BDSRA with your time, your talents or your treasures. There are many opportunities to bring yourself in. Board members actively lead or participate in a number of working committees. We would love members of the community with particular skills to volunteer to work with us on one or more of these committees: Family Support Committee, Advocacy Committee, Development and Fundraising Committee, Marketing and PR Committee, Family Conference Committee or to support initiatives that include increasing awareness, fundraising initiatives, community education and many others.
Board applications are now open! A few members of the Board have reached the end of their board terms so we are seeking board applications from individuals with particular skill sets and experience. Board applicants must have at least one of these areas of specialty/experience: SIBS leadership and support for siblings, Law (attorney), Special education, Human Resources, IT, Accounting, specifically a CPA with a fund accounting background, Fundraising, Marketing, social media, and/or public relations
We, the Board members of the BDSRA truly appreciate your support and kind words of encouragement. Any volunteer support, advocacy, donations and the many small and big deeds that are silently done help make our community stronger! Together we are shaping the BDSRA for a bright future!
Very truly yours,
The BDSRA Board of Directors
Barb McDonough, Chair
Suzette James, Vice Chair
Wayne Kiefer, Treasurer
Gretchen Fieschko, Secretary
Kate Haller
Edward Harriman
Chris Lowden
John Patterson
Dave Pearce
Mathias Schmidt
Fred Surrey
Ned Timmerman
