News and information on issues relevant to you as a parent, caregiver, and advocate of a child with Sanfilippo Syndrome.
News From the Foundation
Foundation raises nearly $4 million with three GoFundMe campaigns to cure Sanfilippo Syndrome
Current campaign is nearing the $1 million mark to fund a first-ever clinical trial Cure Sanfilippo Foundation is on track to raise another $1 million via a GoFundMe fundraiser for research and clinical trials to cure Sanfilippo Syndrome. This is the third...
Family Friday Blog: The Burroughs Family
Get to know the Burroughs family – Craig, Sara, Hannah, Addison, and Carson! Find out what the past year has been like in their lives with this week’s Family Friday.Get a glimpse into living with Sanfilippo Syndrome through the Burroughs family's honest and insightful...
Family Friday Blog: Loralei’s Family
Get to know Loralei and her family – mom Brandi, stepdad Cody, brothers Brayden and Blayne, and sister Sierra! Find out what the past year has been like in their lives with this week’s Family Friday.Get a glimpse into living with Sanfilippo Syndrome through their...
Family Friday Blog: The Rixer Family
Get to know the Rixer family – Andreas, Lisa, Saga, Casper, and Maia! Find out what the past year has been like in their lives with this week’s Family Friday.Get a glimpse into living with Sanfilippo Syndrome through the Rixer family's honest and insightful...
Family Friday Blog: The Willich Family
Get to know the Willich family – Jarrod, Megan, Beckett, and Kaisa!Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Willich family's honest and insightful...
Family Friday Blog: The Shamaly Family
Get to know the Shamaly family – Kerry, Josephine, Alexander, and Ellie! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Shamaly family's honest and insightful...
Connor’s Crew: Children racing against time to save their best friend’s life
Most 12-year-olds are dreaming of what they want to be when they grow up, navigating school cliques, and still enjoying the waning days of childhood innocence. This group of 12-year-olds have known Connor Dobbyn since kindergarten. Long before he was diagnosed with...
Family Friday Blog: The Bittner Family
Get to know the Bittner family – Josh, Lisa, Luke, and Caleb! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Bittner family's honest and insightful perspective....
History being made: ScreenPlus, the largest U.S. newborn screening study, includes Sanfilippo
History is being made! Starting this week, newborns in the largest ever U.S. newborn screening study, ScreenPlus, are being screened for Sanfilippo syndrome Type B! Addition of Sanfilippo Type A will follow in the coming months! Why invest in Newborn Screening...
Family Friday Blog: The Karlson Family
Get to know the Karlson family – Matt, Deanna, Joseph, Addison, and Seth! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Karlson family's honest and insightful...
Family Friday Blog: The Talbert Family
Get to know the Talbert family – Jeremy, Christina, Carson, Ryan, Lucas, and Parker! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Talbert family's honest and...
April 2021 Research Update: New research in 2021 and promising projects already underway
Children should have the chance to grow up. Parents should never have to watch their children suffer and die. There needs to be a treatment or cure for Sanfilippo Syndrome. That’s why you support the Foundation's mission to help children with Sanfilippo. Critical...
Family Friday Blog: The Haywood Family
Get to know the Haywood family – Jason, Ashley, and Sadie! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Haywood family's honest and insightful perspective. The...
Family Friday Blog: The Wallis Family
Get to know the Wallis family – Jeff, Kelly, Abby, and Emily! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Wallises' honest and insightful perspective. The...
Family Friday Blog: The Lagarde Family
Get to know the Lagarde family – Sam, Brittany, Sawyer, and Zion! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Lagardes' honest and insightful perspective. The...
Newborn screening pilot ScreenPlus that includes Sanfilippo Type A and B
When children with a rare disease are diagnosed at birth, they have the greatest opportunity to receive timely, approved treatments or participate in clinical trials that can provide them better quality of life and less pain and suffering. Early diagnosis and...
Family Friday Blog: The Sarkar Family
Get to know the Sarkar family – Samir, Jen, Sophia, and Carter! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Sarkars' honest and insightful perspective. The...
Family Friday Blog: The Hyder Family
Get to know the Hyder family – Jonathon, Nicole, Brayden, Gage, and Rylan! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Hyder's honest and insightful...
Family Friday Blog: The Byers Family
Get to know the Byers family – Tim, Valerie, Will, and Samantha! Find out what the past year has been like in their lives with this week’s Family Friday. Every week, a partner-family shares what’s been happening in their lives over the past year. You’ll get a glimpse...
Free online CME course available on Sanfilippo syndrome
A free, online, continuing medical education (CME) course is available for any healthcare provider interested in learning about Sanfilippo syndrome. The 30-minute course is targeted to healthcare providers who are unfamiliar with Sanfilippo, also known as...