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.
$8.5 million raised since 2013
15,000 children globally 20+ research projects funded
80+ partner families 2 medical trials funded Medical & scientific expertise
WHAT IS
SANFILIPPO
MEET THE
FAMILIES
DONATE
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.
$8.5 million raised since 2013
Medical & scientific expertise
20+ research projects funded
Multiple clinical trials fundedHOW 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
Parents’ first viewing of a video they hope will save dying son
Connor Dobbyn is 12-years-old and has a degenerative and fatal disease called Sanfilippo syndrome. But there is hope in a clinical trial that lacks funding. Connor's parents, Marisa DiChiacchio and Mike Dobbyn, have set out to fund the clinical trial and give Connor a...
Lysogene shares report on LYS-SAF302 biomarker data
Lysogene shared the following press release regarding its LYS-SAF302 Biomarker Data. The results were first shared at WORLDSymposium 2021 in February.PRESS RELEASE Lysogene Reports LYS-SAF302 Biomarker Data Presented at the WORLDSymposium™ 2021 Evidence of positive...
Very special play list: Favorite songs of some children with Sanfilippo
Children with Sanfilippo syndrome love music! Up-tempo, toe-tapping songs that you can't resist jamming along to. Several of the Foundation's partner families recently shared their children's favorite songs and we created a playlist on YouTube.com. It is interesting...
RAISE AWARENESS: WEAR OUR GEAR
