Hi! My name is Noah, I am the Database Manager here at BDSRA and this is my second year celebrating International Batten Awareness Day with the Batten community. I joined the BDSRA Team in late 2022 and have been working with Amy, Patrick, Linda & Ineka to advocate, fundraise, support research and our families ever since.

I have been part of the larger rare disease community for most of my life, as my brother, Ben (who you can see in my profile picture above) was diagnosed with a rare disease when I was four. I am grateful to work with the Batten community and honor Ben's memory by continuing to be an advocate for a great rare disease cause!

If you have any questions or need help please don't hesitate to reach out at support@bdsrafoundation.org.