Carrie & Haidyn Fowler
@haidynshope.bsky.social
Advocate. Author. Mama.
•Cure Sanfilippo Syndrome•
•Cure Sanfilippo Syndrome•
Reposted by 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. 💜
November 17, 2024 at 10:21 PM
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. 💜
Reposted by Carrie & Haidyn Fowler
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
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.
www.curesanfilippofoundation.org
November 23, 2024 at 2:42 PM
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
Reposted by Carrie & Haidyn Fowler
GC Biopharma and Novel Pharma Launch Clinical Trial for Sanfilippo Syndrome Treatment#South_Korea#GC_Biopharma#Sanfilippo_Syndrome#Clinical_Trial#Yongin
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.
third-news.com
November 26, 2024 at 12:55 AM
GC Biopharma and Novel Pharma Launch Clinical Trial for Sanfilippo Syndrome Treatment#South_Korea#GC_Biopharma#Sanfilippo_Syndrome#Clinical_Trial#Yongin
Reposted by Carrie & Haidyn Fowler
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!
November 18, 2024 at 3:38 AM
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!