Simon’s family is using a viral video to fundraise for research that could lead to the first-ever approved therapy for Sanfilippo
Columbia, SC (Nov. 16, 2021) – Simon Croke from Austin, TX, has been sinking baskets on his Little Tykes hoop like a pint-sized pro since he was a toddler. It would only be natural for his parents Alina and Jeremy to be daydreaming about where Simon’s basketball skills could lead him. But they don’t get to dream those dreams because Simon has Sanfilippo Syndrome.
Sanfilippo Syndrome is like Alzheimer’s in children. It is a terminal, degenerative disease that causes children to lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, dementia, and then die usually in their teen years.
Currently there is no FDA-approved treatment or cure for Sanfilippo Syndrome. However, there is new research that could help Simon.
Simon’s family is sharing his story and talents via a three-minute viral “Help Simon” video to help raise money for this critical research. Research that could make a treatment available that allows Simon to live, to thrive, and to someday play on a basketball team. A treatment that could help him and other children to escape the pain and suffering of Sanfilippo.
The “Help Simon” viral video aims to raise $1 million to fund two new research pathways that could benefit Simon and other children with Sanfilippo. The first is a new therapeutic approach using CLR01 “molecular tweezers” that has shown promise in pre-clinical results in both Alzheimer’s disease and Sanfilippo Syndrome. This therapy could reduce neuroinflammation and actually improve cognitive function for children with Sanfilippo. The second is a new stem-cell therapy project that has the potential to replace the missing enzyme for Sanfilippo Syndrome and could result in halting disease progression and bring neurorestorative benefits.
”With continued positive results, we would like to move both of these projects toward a clinical trial for children,” said Glenn O’Neill, President & Co-Founder of Cure Sanfilippo Foundation and father to a daughter with Sanfilippo Syndrome.
Viewers of the “Help Simon” video are asked to donate to HelpSimon.com and to share the video with others to keep spreading Simon’s story.
“The emotional and uplifting video especially resonates with parents, who see their children in Simon’s smile, kindness, and laugh,” said O’Neill. “They feel the tragedy of Simon not even having the chance to see where his basketball skills could take him because of Sanfilippo. They want to do whatever they can to help, so they donate and then share the video far and wide. These kind and generous people want Simon to continue to be able to shoot hoops and play on a team one day, instead of suffering and pain.”
Watch the video and learn more about Simon at www.HelpSimon.com.
Cure Sanfilippo Foundation is a 501(c)3 nonprofit dedicated to advocating and funding research to bring about treatments and/or a cure for Sanfilippo Syndrome. Cure Sanfilippo has funded 30+ research grants around the world which has helped three clinical trials get underway, to date, treating children with Sanfilippo Syndrome. The Foundation creates and explores innovative and breakthrough research to ensure multiple promising paths are being explored in the effort to save children and better their quality of life. Learn more about Sanfilippo Syndrome and the Foundation at CureSanfilippoFoundation.org.
Photography courtesy of Amy Mikler Photography