Clare O’Rourke
@clareorourke1970.bsky.social
Mummy, Maternity Nanny and Advocate to all Children but especially all our San Filippo Syndrome babies and families 💜💜💜💜💜💜💜💜💜
Reposted by Clare O’Rourke
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 Clare O’Rourke
Veda's favorite animal is a turtle 🐢 My daughter has Sanfilippo syndrome, and "turtle" is one of the few words she's still able to say. #Sanfilippo #sanfilliposyndrome #veda #mps #MPSIII
January 12, 2025 at 2:32 PM
Veda's favorite animal is a turtle 🐢 My daughter has Sanfilippo syndrome, and "turtle" is one of the few words she's still able to say. #Sanfilippo #sanfilliposyndrome #veda #mps #MPSIII
Reposted by Clare O’Rourke
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!