Hi! My name is Noah Siedman, I joined the BDSRA team this past Nov. as their Database Manager and have been working with Amy, Linda and Patrick to help bring events like this to the community.
I got involved in the rare disease world when my brother Ben (the one pushing that big haybale with me in the picture above) was diagnosed with a disorder not unlike Batten. It is important to me to use all of the lessons learned from being Benjamins’ brother to help other families and siblings of rare disease.
I hope you all will join me and the BDSRA staff (virtually) for this year’s IBAD 5k event!
If you have any questions about signup or registration, please feel free to reach out to me at my email: noah@bdsrafoundation.org and I will help you out!