FOR IMMEDIATE RELEASE
MEDIA CONTACT: Glenn O’Neill
President & Co-Founder
Cure Sanfilippo Foundation
Columbia, SC (Oct. 17, 2020) – More than 1,600 people have been moved by the “Save Connor” viral video and donated $100,000 in the 24 hours since it was launched at 3:00 p.m. EDT on Oct. 16 to help fund a first-ever clinical trial that could save Connor and other children.
“I’m speechless,” said Connor’s mom Marisa DiChiacchio. “The shares, donations, offers to help, words of support and encouragement. It just continues to demonstrate, time and time again, how many people Connor has touched the lives of.”
The “Save Connor” video is hoping to raise $3 million for the first-ever gene therapy clinical trial for Sanfilippo Syndrome Type C. Connor’s type of Sanfilippo and his only chance at life.
“The emotional and uplifting video especially resonates with parents, who see their children in Connor’s smile, kindness, and laugh,” said Glenn O’Neill, President of Cure Sanfilippo Foundation. “They feel the tragedy of money being what will determine whether Connor has a chance at life. 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 Marisa and Mike to wake up one day and know that money will not stand in the way of Connor getting to live.”
“If I can ask you for one favor today and that is to share again. Help us save our boy,” asked Dichiacchio on a Oct. 17 Facebook post.
“I find myself completely blown away and overwhelmed by the outpouring of humanity, fight, and love that people are showering upon my family, especially for my beautiful boy Connor,” said Connor’s dad Michael Dobby. “Thank you, from the bottom of my heart, for standing and marching so strongly with me and my family as we venture forward on the treacherous road ahead.”
Sanfilippo Syndrome is a terminal, neurodegenerative disease that causes children to lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, and then die.
Sanfilippo Syndrome is caused by a single gene defect which leads to lack of a necessary enzyme in the body. This lack of enzyme results in the build-up of toxic storage in every cell, and is especially harmful to the brain. This build-up causes a cascade of detrimental effects and ultimately death.
There is currently no FDA-approved treatment or cure for Sanfilippo Syndrome. However, gene therapy has shown in pre-clinical models that it can stop the disease. Researchers are ready to conduct the first-ever gene therapy clinical trial for Connor’s type of Sanfilippo Syndrome which they hope will show the same therapeutic benefits in children. But the trial lacks funding.
All donations to “Save Connor” go to Cure Sanfilippo Foundation, a 501(c)3 nonprofit (Tax ID: 46-4322131) will be used for the clinical trial. Donations are tax deductible.
Learn more about Sanfilippo Syndrome, including the signs and symptoms.
Additional information for the media.
Photo courtesy of Taproot Photography