June 9, 2024
Together, We Are Batten Advocates for a Cure.
What is the IBAD 5k? The International Batten Awareness Day 5k raises funds to help the Batten Disease Support and Research Association (BDSRA) in their mission - to support affected families, fund and facilitate research, and move the needle forward toward more therapies and a cure for Batten Disease. You can complete your 5k any time, wherever you'd like, or just donate to our team - your registration fee goes directly to support the BDSRA (501c3). Make sure to post using #BattenDay2024 and #TeamPenelope!
Team Penelope is made up of family, friends, teachers, therapists, and medical professionals who are dedicated to maintaining Penelope’s quality of life, and building awareness of CLN2 Batten Disease.
About Us: Penelope is 10 years old, diagnosed with CLN2 Batten in September of 2017. Our medical team infuses enzymes directly into her brain every two weeks - these treatments slow her disease, but ultimately this is not a cure. Pen lives in Bethesda, Maryland, with her Mom & Dad, and two older siblings, Declan (12) and Avery (14).
Email: Claudia Fennell - claudia.p.fennell@gmail.com
Facebook: Claudia Branton Fennell
Instagram @claudiafennell
**For any questions or assistance with donation or registration, please email support@bdsrafoundation.org