News and information on issues relevant to you as a parent, caregiver, and advocate of a child with Sanfilippo Syndrome.
News From the Foundation
Support from fellow siblings of children with Sanfilippo and other disorders
Grey Chapin has carried a heavy load in her young life. Her older sister Blair died of Sanfilippo Syndrome, a terminal neurodegenerative genetic disorder, at 15-years-old in 2017 when Grey was in middle school. Grey chooses to honors her sister by helping other...
VIDEO: What Craig & Sara want to say to you
https://youtu.be/dOxewsJad4w This is Craig and Sara. Their beautiful son Carson is participating in a new clinical trial that your generosity made happen. This is their message to you. Your support enabled Cure Sanfilippo Foundation to build this clinical trial...
AmazonSmile now available in Amazon App
Shopping on Amazon = Saving Kids Today's reality of social distancing likely has you shopping online more than ever. Imagine if every time an Amazon box arrived on your doorstep, it also helped fund research and clinical trials to cure Sanfilippo Syndrome. That would...
Mom to face her greatest fear – skydiving – to save her daughter
https://www.facebook.com/CureSanfilippoFoundation/videos/283320393012600/ Haidyn's mom Carrie is facing her life-long fear of heights to help fund research that could save her daughter. Carrie Fowler's biggest, most-crippling fear has always been heights. Flying on a...
From our families to yours: Favorite recipes, perfect for summer
Here are more favorite recipes from our partner families, perfect for enjoying the summer season. Byers Family's Homemade Chicken Nuggets 1 packet Lipton Onion Soup Mix 2/3 cup bread crumbs 1/8 tsp pepper 1 egg 2 tbsp water 1 stick butter, melted 1-1/2 lb skinless,...
Fabric face masks now available in Foundation’s online store
Just like a cure can't wait for the pandemic, awareness won't either. Families and supporters are taking advantage of face masks as a way to spread awareness about the fight to cure Sanfilippo Syndrome. Cure Sanfilippo Foundation is helping by offering multiple face...
Cure Sanfilippo joins in calling for addition to Cures 2.0 legislation
Cure Sanfilippo Foundation is one of 46 patient advocacy organizations to sign-on to a letter asking U.S. Representatives Diana DeGette (D-Colorado) and Fred Upton (R-Michigan) to include H.R. 4144 - Ending the Diagnostic Odyssey Act in the Cures 2.0 legislation. The...
The Big Give 2020 generates nearly $4,000 for Cure Sanfilippo
Thanks to many generous donors, the Foundation’s first-ever participation in The Big Give was a great success! The Big Give, a two-day community giving day in Ohio, raised $3,845 in honor of Central Ohio families affected by Sanfilippo Syndrome, like Oliver Kelly,...
Foundation contributes to published list of early symptoms of MPS III
Cure Sanfilippo Foundation Chief Science Officer Cara O'Neill, MD, FAAP, and Board Member Valerie Byers, PhD, are among the contributors of a newly-published paper that identifies the most-important, early symptoms of Mucopolysaccharidosis III (MPS III) to assist...
Cure Sanfilippo expands its website to provide additional information
Information, support, and resources regarding the more than 7,000 rare diseases in the world, which includes Sanfilippo Syndrome, can be scarce. Cure Sanfilippo Foundation has expanded its website to help fill the gap of information about Sanfilippo Syndrome for...
Cure Sanfilippo participating in The Big Give 2020, June 11-12
The Big Give 2020 is a 25-hour online giving rally in Ohio to support nonprofits and equip them with the resources they need to deal with challenging issues. It is an opportunity to uplift the missions of nonprofits that do vital work benefiting the people and...
Key Points of Sanfilippo Advocacy Group Response to FDA Guidance
The combined Sanfilippo Advocacy group submitted comments to the U.S. Food and Drug Administration's (FDA) on May 5, 2020, regarding its draft guidance on drug development for Sanfilippo Syndrome for review. These advocacy group is working closely with the FDA on the...
Connor Beats Sanfilippo online campaign crosses $150,000 for Type C
In spring 2019, Connor Dobbyn's parents were told their son had Sanfilippo Syndrome, Type C (one of the rarest types), and that it will take his life. Like Alzheimer's in children, Sanfilippo will cause Connor to lose all the skills he’s gained, stop speaking and...
Foundation Update | New Project & Progress – May 2020
This spring hasn’t been easy for anyone. But many generous people have made it a little less stressful for families of children with Sanfilippo Syndrome (MPS III). People's support of and generosity to Cure Sanfilippo Foundation have been the rainbow in a storm of...
Cure Sanfilippo funds $380,000 for first MPS IIIC gene therapy
Cure Sanfilippo Foundation funds $380,000 to Phoenix Nest Inc. to support path to first-ever MPS IIIC Gene Therapy COLUMBIA, SC (May 15, 2020) — Cure Sanfilippo Foundation is thrilled to announce funding of $380,000 to the New York-based biotechnology company Phoenix...
Devoted mom shaves her head for Cure Sanfilippo, raise awareness
On May 10, 2020 ... Mother's Day in the United States ... Jill Wood shaved off her lovely red hair to raise awareness and fundraise for research to cure children with Sanfilippo Syndrome, like her 13-year-old son Jonah....
“Light Up the Night” on May 15 to honor MPS Awareness Day
"LIGHT UP THE NIGHT" for MPS on Friday, May 15. Friday is a big day in the MPS community every year. It is International MPS Awareness Day. This Friday, May 15, when it gets dark, families, friends, and supporters will light candles outside their homes -- in their...
Inspiring generosity on GivingTuesdayNow; $146,202 in donations
Uplifting Support Seen on GivingTuesdayNow Supporters around the world answered the call of "A Cure Can't Wait" and donated an astonishing $146,202 on GivingTuesdayNow, May 5, to Cure Sanfilippo Foundation. Thirty-three families of children with Sanfilippo Syndrome...
Combined response to FDA draft guidance on drug development
On May 5, Cure Sanfilippo Foundation submitted the combined Sanfilippo Patient Advocacy Group Response to the U.S. Food And Drug Administration's (FDA) February draft guidance regarding the development of drugs to treat MPS III (Sanfilippo Syndrome). The 39-page...
Sanfilippo caregivers invited to take RDCRN coronavirus survey
The novel coronavirus pandemic can have a serious impact on people with rare diseases and their families. Yet, not much is known about it. The Rare Diseases Clinical Research Network (RDCRN), which is funded by the National Institutes of Health (NIH), is conducting a...