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.
Be a part of changing fate.
A donation is all it takes.

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

30+ research projects funded



CHANGES
EVERYTHING
SAVE CHILDREN’S LIVES.
HELP CURE SANFILIPPO.
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.
Your donation helps funds research to accelerate discovery of a cure, so parents can dream of their children’s futures again.
Be a part of changing fate.
Your donation makes it happen.
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
Family Friday Blog: The Lagarde Family
Get to know the Lagarde family – Sam, Brittany, Sawyer, and Zion! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Lagardes' honest and insightful perspective. The...
Newborn screening pilot ScreenPlus that includes Sanfilippo Type A and B
When children with a rare disease are diagnosed at birth, they have the greatest opportunity to receive timely, approved treatments or participate in clinical trials that can provide them better quality of life and less pain and suffering. Early diagnosis and...
Family Friday Blog: The Sarkar Family
Get to know the Sarkar family – Samir, Jen, Sophia, and Carter! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Sarkars' honest and insightful perspective. The...
RAISE AWARENESS: WEAR OUR GEAR