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
“I’ll do anything for my child” is pushed to the limits by Sanfilippo parents
Like every parent, Carrie and Caleb will do anything for their children. Which has led them to facing their fear of heights in order to raise funding for research to cure Sanfilippo Syndrome, which affects their youngest daughter Haidyn. Carrie and Caleb decided to...
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...
Remembering the life of April Lucas
April Lucas passed away in June at the age of 50. She had Sanfilippo Syndrome Type C, one of the rarest types of Sanfilippo Syndrome. We honor and remember April, and continue the pursuit of a cure for Sanfilippo. Below is from her sister Melody....