January 14, 2026

Dear Community,

For 39 years, BDSRA has been dedicated to creating a world without Batten Disease. Our mission is to support Batten families, fund and facilitate research and advocate for treatments and a cure. As we look toward the next chapter of our growth, we are writing to share some important updates regarding our organizational structure.

Why We Are Evolving
To better serve our community and ensure the long-term sustainability of our programs, the Board of Directors and leadership team have decided to implement a strategic restructuring. As part of that restructuring, effective today, the President/CEO position has been eliminated. We thank Amy Fenton Parker for her years of service with BDSRA and wish her well in her future endeavors.

Key Changes
While our mission remains identical, you will see the following shifts over the coming months:

Streamlined Operations: Through process optimization, reducing operational redundancies and leveraging technology, we will focus on reducing expenses and creating a lean organization.

Enhanced Focus: In order to maximize the measurable impact of every dollar donated, not only will we prioritize management of our resources but also focus on significantly increasing our fundraising dollars.

What This Means for You:
For our Partners: Our existing commitments remain unchanged. We will be in touch very soon to discuss your point of contact moving forward.

For our Supporters: Your contributions are more vital than ever as we transition into this leaner, more efficient and sustainable model.

For our Staff: We are committed to transparency throughout this process. Detailed briefings will follow this announcement.

Looking Ahead:
Change is rarely easy, but it is necessary to ensure sustainability and future growth. This restructuring is not just about changing “how” we work-it is about ensuring we can continue “why” we work for decades to come.

We are incredibly grateful for your continued passion and dedication to BDSRA and our entire community. While we realize times like these can be unsettling, please be assured we remain optimistic regarding our future and are poised to tackle these challenges head-on. Securing a solid financial future requires intense focus, allowing us to remain dedicated to our essential mission.

If you have any immediate questions, please feel free to reach out to me at: barbm@bdsrafoundation.org.

Sincerely,

Barb McDonough
BDSRA Board Chair