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,...
Parent News
“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...
Would you believe TikTok is filled with kind-hearted people? This family has seen it.
Would you believe me that TikTok is a place filled with amazing, kind-hearted people? I know because we’ve experienced it. “Will you watch it with us?” With this six-word invitation, millions of people on TikTok opened their hearts and joined my husband Jeremy...
Podcast Episode 11: WORLD highlights, early Anakinra results, new gene therapy trial + more
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 FDA-approved treatment. In podcast...
Community’s vision for Rare Disease Center for Excellence at FDA
The Speeding Therapy Access Today (STAT ACT), H.R. 1730/S. 670, includes creation of a Rare Disease Center for Excellence within the U.S. Food and Drug Administration (FDA). The legislation was introduced March 2021 and is currently assigned to the House Committee on...
2.6M views: TikTok community rallies around ‘Help Simon’ parents hoping to save their little boy, who has amazing basketball skills
A TikTok video has inspired people to donate more than $63,000 in the past six days to the couple’s GoFundMe account On Wednesday, March 16, Alina and Jeremy Croke shared their raw and emotional reaction to watching a video for the first time that they hoped...