Every parent dreams about their kid’s future and watching it unfold.
Sanfilippo Syndrome takes all that away, replacing it with pain and suffering. The child experiences severe dementia and dies in their mid-teens. All before their parents eyes.
Cure Sanfilippo Foundation architects and funds cutting-edge research to accelerate discovery of a treatment or cure for Sanfilippo Syndrome so parents can dream of their children’s futures again.
Help save children.
VIDEO: One Family’s Sanfilippo Story
And the reality for every family living with Sanfilippo Syndrome.
We are writing the next chapter for Sanfilippo Syndrome. The chapter of the cure. Every project we architect or fund gets families closer to a cure in this lifetime.
$10 million raised since 2013
15,000 children globally 30+ research projects funded
90+ partner families 3 clinical trials funded Medical & scientific expertise
WHAT IS
SANFILIPPO
MEET THE
FAMILIES
DONATE
A cure can’t wait.
Every parent dreams about their child’s future and watching it unfold.
Sanfilippo Syndrome
takes that all away.
Sanfilippo Syndrome is a rare, terminal, neurodegenerative disease that causes children lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, and then die. All before their parents eyes.
Cure Sanfilippo Foundation architects and funds cutting-edge research to accelerate discovery of a treatment or cure for Sanfilippo Syndrome so parents can dream of their children’s futures again.
Help save children
VIDEO: One family’s story.
Every Sanfilippo family’s reality.
With your support, we are writing the next chapter on Sanfilippo Syndrome.
The chapter of the cure.
Every project we architect or fund gets families closer to a cure in this lifetime.
$10 million raised since 2013
Medical & scientific expertise
30+ research projects funded
Multiple clinical trials funded
HOW YOU CAN HELP
DONATE
Find the
donation option
that fits you
FUNDRAISE
Easily create
and host your own
online fundraiser
TELL OTHERS
Make a difference
by telling others
about Sanfilippo
YOUR SUPPORT HELPS FIND A CURE
HOW YOU CAN HELP
DONATE
Find the
donation option
that fits you
FUNDRAISE
Easily create
and host your own
online fundraiser
TELL OTHERS
Make a difference
by telling others
about Sanfilippo
MEET THE
FAMILIES
OUR MISSION
The name says it all:
To cure Sanfilippo.
By advocating for and funding research directed towards a cure and treatment options.
FUNDRAISING GOAL
The Foundation’s focus in 2021 is funding the most-promising research and elevating the voices of caregivers in pursuit of a cure for Sanfilippo syndrome.
Fundraising is critical fuel for those goals. Our goal is to raise $2,000,000 in 2021. We need your help to get there, especially in these turbulent times.
LATEST NEWS
Any developmental delay or intellectual disability calls for genome sequencing
The American College of Medical Genetics and Genomics strongly recommends exome and genome sequencing as a first or second-tier test for children with developmental delay or intellectual disability that occurs by age 18, as well as those with congenital anomalies that...
Using TikTok to spread awareness about Sanfilippo Syndrome
Families seizing new opportunity to educate people about Sanfilippo TikTok has become a booming social media platform for people sharing all sorts of content, including families of children with Sanfilippo. Many families have grown significant followings as people...
Podcast Episode 4: Teacher worksheet; Sanfilippo on TikTok + more
The Sept. 7, 2021, episode of the Foundation's "A Close Look at Sanfilippo" podcast spends 10 minutes (and a little more in this episode) diving into five hot topics regarding Sanfilippo Syndrome, a rapidly degenerative disease in children currently with no...
RAISE AWARENESS: WEAR OUR GEAR
