September 2021
Dear Batten Community,
We are pleased to present to you the BDSRA 2019-2020 Impact Report. Although 2019 seemed like a
vague memory and 2020 seemed to stand still, we invite you to turn back the clock in your mind, as
we did, to see a glimpse of the work that never stopped.
This report includes information relevant to our pillars of work: Support, Research, and Advocacy. Even
during the toughest of times, we did not miss a Family Conference, launched new programming, gave
research grants and participated on the Hill for advocacy. Whether in person or virtually, our Batten
community was there. We invite you to reminisce about the good work highlighted on the enclosed
pages.
As we see 2021 taking shape, there are many positives on the horizon for BDSRA. We have increased
our support programming. We have launched a #ToolboxTuesday initiative to give our community
the resources to advocate for Batten kids and their families. We are working to fortify our research
granting process, and we are growing our team to better serve you. In the end, the pendulum has
swung forward, and we have embraced it.
Although COVID-19 has thrown a wrench in our gears, we are winding up in 2021 for the future of
BDSRA, and we invite you to join us. We envision a world without Batten disease, and we need your
support to accomplish it. Whether you donate, raise funds for us, share your story or participate in
our offerings, you are essential to BDSRA and our legacy of support, research and advocacy for Batten
disease.
With Hope,
Amy Fenton Parker
BDSRA President & CEO
