Sanfilippo Is a Rare Disease, But There Is Greater Awareness Than Ever.
The compassion of people is truly amazing. In five years, more than $8 million has been donated to the Foundation.
All of it coming from individuals who heard the stories of Sanfilippo families and made the selfless choice to help our kids have a chance at life. More than 40,000 strangers have stepped up to help find a cure for Sanfilippo Syndrome.
We work to keep elevating awareness by constantly telling the story. For one Sanfilippo family’s story is the reality for all of us.
Thought-Leadership Projects
Curing Sanfilippo is our ultimate goal, but your support also allows us to play a critical roll in influencing the road that leads there. Learn more about the Foundation’s thought-leadership projects.
Collaborations
Curing Sanfilippo is our ultimate goal, but your support also allows us to play a critical roll in influencing the road that leads there. Learn more about the Foundation’s collaborative mindset.
Sanfilippo Syndrome In The News
Study explores psychological and physiological benefits of music therapy treatment for Sanfilippo
"Music therapy can be a useful form of treatment with multiple benefits for children with conditions such as MPS III or similar conditions," according to "Music therapy and Sanfilippo syndrome: an analysis of psychological and physiological variables of three case...
Help Simon video raises $50,000+ in first week; gathering media attention
"Help Simon," a viral videao aiming to raise $1 million for two promising research pathways for Sanfilippo Syndrome Type B, has raised more than $50,000 since it's launch on World Sanfilippo Awareness Day last week, Nov. 16.Media Attention for Help Simon It has also...
Foundation applauds North Carolina lawmakers for newborn screening legislation
Ealier this month, North Carolina Governor Roy Cooper signed critical legislation that updates the state's newborn screening program. Referred to as "RUSP alignment legislation," the new state law implements a three-year timeline in which the screening must begin for...
5-year-old boy’s phenomenal basketball potential will go unrealized unless a treatment is found for Sanfilippo Syndrome
Simon's family is using a viral video to fundraise for research that could lead to the first-ever approved therapy for Sanfilippo Columbia, SC (Nov. 16, 2021) - Simon Croke from Austin, TX, has been sinking baskets on his Little Tykes hoop like a pint-sized pro since...
Podcast Episode 8: BIG WEEK! World Sanfilippo Day & viral campaign; Trivia Gala; All Stripes; + more
The Nov. 15, 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...
Podcast Episode 7: Ideal for FDA’s accelerated approval; guide for newly-diagnosed families; + more
The Oct. 27, 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...