Team Penelope is made up of family, friends, clinicians, teachers and therapists who are dedicated to maintaining Penelope’s quality of life, and building awareness of both Batten Disease and rare diseases in general. We are dedicated to advocacy in regulatory and legislative contexts, as well as supporting the special needs community within our school. Team Penelope aims to further CLN2 Batten Disease research, through funding and advocacy.
About our family: Penelope is 11 years old, diagnosed with CLN2 Batten Disease in September of 2017, when she was in preschool. She has been receiving enzyme replacement therapy (Brineura) for over six years at Children’s National Medical Center in Washington, D.C., attends 5th grade full time, and lives in Bethesda, Maryland, with her Mom & Dad, brother (Declan), and sister (Avery).
Connect with Us Email: claudia.p.fennell@gmail.com Facebook: Claudia Branton Fennell Instagram @claudiafennell
