What is the IBAD 5k? The International Batten Awareness Day Virtual 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. Your registration fee goes directly to support the BDSRA. Make sure to post using #BattenDay2024 and #TeamPenelope!

Team Penelope is made up of family, friends, teachers, therapists, and doctors who are dedicated to maintaining Penelope’s quality of life, and building awareness of CLN2 Batten Disease. Walk, run or bike your 5k whenever, wherever, or just donate to our team!

About Us: Penelope is 10 years old, diagnosed with CLN2 Batten Disease 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