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.
$12.5 million raised since 2013
15,000 children globally 35+ research projects funded
100+ partner families globally
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.
Has your child been diagnosed with Sanfilippo?
We are here to help.
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.
$12.5 million raised since 2013
Medical & scientific expertise
35+ 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 2022: funding the most-promising research and elevating the voices of caregivers in pursuit of a cure for Sanfilippo syndrome.
Fundraising is critical fuel for these goals. Our goal is to raise $2,000,000 in 2022. We need your help to get there, especially in these turbulent times.
LATEST NEWS
Sanfilippo Type A gene therapy ABO-102 program will continue, Ultragenyx acquires rights
Funding, endpoints, and more continue to make the road difficult in reaching an approved therapy for Sanfilippo Syndrome (MPS III). Over the years, including recently, clinical trials for Sanfilippo Syndrome were discontinued for these many reasons. Which makes...
A birthday message to Aidan: “I’ll love you until my last breath and never give up your fight.”
On May 10, Tina Holcomb shared the following words in honor of her son Aidan's 10th birthday in a Facebook post. About how Sanfilippo Syndrome has impacted every aspect of their lives for the past 10 years. But also how they find the joy in the moments they have,...
“Strong As a Mother” – A mom’s poem about Sanfilippo Syndrome
This Mother's Day, Lisa Bittner put on a shirt that bore the message, "Strong Like a Mother." As a mom of a son with Sanfilippo Syndrome, Luke, it inspired her to write the following, which she shared on her family's Facebook page dedicated to Luke, "Hope Joy Love...
RAISE AWARENESS: WEAR OUR GEAR
