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
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...
Recent scientific articles relevant to Sanfilippo Syndrome: May 4, 2022, digest
Every week thousands of scientific articles on various topics are published. Here are some recent articles and abstracts that are relevant to understanding, managing, and/or treating Sanfilippo Syndrome (mucopolysaccharidosis III or MPS III)."Caregivers’ assessment of...
Chive Charities hosts flash fundraiser for “Help Simon” and Cure Sanfilippo
On Tuesday, Chive Charities kicked of a first-of-its-kind fundraiser to help Simon and other children with Sanfilippo Syndrome. Chive Charities, a 501(c)3 organization, traditionally supports the direct needs of underserved veterans, military families, first...
“Our suffering will prove to be something bigger” shares Sanfilippo mom in podcast
Sara Burroughs, mom of Carson, who is 11 and has Sanfilippo Syndrome, was invited by Brian Roberts to be the first guest on his inaugural BRob Inspired podcast, which is dedicated to sharing "ordinary people doing extraordinary things." Sara and Brian began the...