Carrie & Haidyn Fowler

My daughter Veda has Sanfilippo syndrome. It's a rare, terminal illness that currently has no FDA approved treatment. We are busy raising awareness and fundraising for a cure. 💜

17.11.2024 22:21 — 👍 3    🔁 2    💬 0    📌 0

Cure Sanfilippo Foundation | To cure Sanfilippo Syndrome A cure can't wait. The Foundation accelerates research to find a cure and/or treatment for Sanfilippo Syndrome (MPS III), childhood dementia.

First post. Sanfilippo syndrome is a rapidly degenerative and fatal disease in children. Cure Sanfilippo Foundation advocates for and funds research for a cure or treatment options for children with Sanfilippo syndrome. Learn more at www.curesanfilippofoundation.org #curesanfilippo

23.11.2024 14:42 — 👍 3    🔁 3    💬 1    📌 0

GC Biopharma and Novel Pharma Launch Clinical Trial for Sanfilippo Syndrome Treatment GC Biopharma and Novel Pharma have initiated a crucial Phase I clinical trial for a promising treatment of MPS IIIA, starting with the first patient in the US.

GC Biopharma and Novel Pharma Launch Clinical Trial for Sanfilippo Syndrome Treatment #South_Korea #GC_Biopharma #Sanfilippo_Syndrome #Clinical_Trial #Yongin

26.11.2024 00:55 — 👍 3    🔁 2    💬 0    📌 0

17.11.2024 09:47 — 👍 33775    🔁 1632    💬 274    📌 58

Hey y’all! Most of you will know us from Tiktok & IG. We are here to educate about a form of childhood dementia, called, Sanfilippo Syndrome. 🫶🏼💜 let me find my people!

18.11.2024 03:38 — 👍 8    🔁 2    💬 1    📌 0