The FDA delayed a gene therapy that could save children with Sanfilippo syndrome — a disease that steals children’s voices, mobility, and memories.
Please sign the letter now. Add your voice to the 25,000 we have.

🔗 tinyurl.com/UNC-RareDis

#ApproveHopeNow #WalkTheTalkMakary #SanfilippoSyndrome

Today they have crossed a deep red line.

We, the people, must hold the president and his appointees accountable for this outrageous abuse against American liberty.

Strength in numbers, LA. Keep resisting! 💪 #LA

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

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!

I’m so filled with rage every day now, knowing all these little kids’ names and faces (including one with Sanfilippo Syndrome Type B). My body doesn’t know where to put the rage.

Kids should be in school, and their biggest concern should be what color gel pen to use.

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

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

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. 💜