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
Foundation partner RDMD secures $14 million for expanded work
RDMD, which has partnered with Cure Sanfilippo Foundation and other select patient advocacy groups, announced it has raised $14 million in Series A financing to continue its work to accelerate rare disease research and drug development. RDMD has developed an FDA-ready...
What does “better” mean and who gets to decide that?
Dr. Cara O'Neill, Chief Science Officer for Cure Sanfilippo Foundation, posed this question regarding study endpoints to an audience of before the audience of research scientists, biotech leads and industry partners, physicians, U.S. Food & Drug Administration...
Coronavirus & Sanfilippo Syndrome: What Every Parent Should Know
How to Navigate Coronavirus As A Caregiver For A Child With Sanfilippo Syndrome The Coronavirus pandemic adds another layer of complexity and concern to people and families dealing with chronic illnesses and diseases such as Sanfilippo Syndrome. The concerns of...
“George to the Rescue” show renovates Sanfilippo family’s home
"5-year-old Cameron Hyman suffers from Sanfilippo syndrome, a rare genetic condition. Six days after the doctors confirm her condition, Cameron's mom Christina was diagnosed with breast cancer. This fighting family is surprised with a living room renovation they truly...
Caregiver Preference Study for Sanfilippo presented to FDA
The urgent mission to save children from the fatal and rapidly-degenerative disease Sanfilippo Syndrome must continue because the disease's devastating effects never stop, no matter what else is happening in the world. With this mindset, Cure Sanfilippo Foundation and...
Information on Coronavirus & people with chronic medical conditions
Parents of children with Sanfilippo Syndrome are already managing a complex medical condition, which can be further complicated by illnesses. The Center for Disease Control has compiled a list of resources about COVID-19 for people managing their own or others'...
Video: Foundation provides scientific update, Coronavirus impact
Finding treatments and a cure for Sanfilippo Syndrome is the mission of the Foundation, it partner families, and families of children with Sanfilippo around the world. The Foundation is ardently continuing this mission on all fronts, including the science/research,...
March 31: NORD Webinar on COVID-19 and Families w/ Special Needs
Are you a rare patient or caregiver with concerns related to the COVID-19 outbreak? Do you need strategies for coping, staying healthy, and reducing anxiety during this uncertain period? NORD (National Organization for Rare Disorders, Inc.) is hosting a special...
How to keep kids occupied and learning while home | Resource List
Kids are home. Now what to do with them?How to keep them occupied, learning, and physically active is on the minds of parents everywhere as we all practice social distancing. Maybe that’s you or someone you know.We want to help.You’ve done so much for the families of...
Statement on Coronavirus
The world is grinding to a halt because of Coronavirus. Except for one thing that continues at the same pace ... time. And time is the greatest enemy to children with Sanfilippo Syndrome. Coronavirus is impacting the Sanfilippo community on a few crucial and...
Amid Coronavirus (COVID-19) outbreak, O’Neills’ 726 days of isolation sparks interest
One Sanfilippo family's experience relevant to today's Coronavirus concerns about self isolationThe O’Neill family voluntarily quarantined themselves for 726 days (4 days short of 2 years) a few years ago to avoid a common virus that would have made their daughter...
WILLPower team raises $41,000 in 2020 The Woodlands Marathon Charity Challenge
For the third year, the Byers family has lead the WILLPower marathon and fundraising team to great heights at the 2020 The Woodlands Marathon, including a first-place finish the Charity Challenge.The Byers family has running in their blood, each one of them loving to...