TikTok Community Rallies to ‘Help Simon’ and Find a Treatment

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by Mary Chapman |

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Help Simon video | Sanfilippo News | loving doodle illustration of person with heart on shirt

A film crew visited Alina and Jeremy Croke’s Texas home last spring to make a video about their young son, Simon, in hopes of raising $1 million to help find a treatment for Sanfilippo syndrome type B.

That video, his parents hoped, might help to save 5-year-old Simon’s life. An earlier video of the child repeatedly shooting a basketball into a miniature hoop had already garnered donations to a GoFundMe account for Sanfilippo research.

The Crokes, who had no clue how the videographers would put the story together, saw the production for the first time last month — and shared on the social media platform TikTok their reaction as they viewed it.

That video has since gone viral, eliciting donations of more than $63,000 in its first six days to help advance two research projects that could benefit Simon and others with the rare disorder.

The emotional recording shows the parents, by turns weeping and smiling, as they watch the video in which the toddler interacts with them at the family’s Austin home, and showcases his kiddie basketball talents. Simon is shown doing something he loves and is extraordinarily good at — tossing a basketball from increasingly longer distances into a miniature toy hoop.

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Help Simon campaign | Sanfilippo Syndrome News | photo of 5-year-old SImon Croke with his parents

Parents’ Help Simon Campaign Aims to Raise $1M to Find Cure for Son, 5

In that video, the parents express their anguish about their son’s diagnosis, but also their hope for an effective treatment. The Crokes are hoping for the development of new therapies before Simon, who was diagnosed some three years ago, loses his ability to walk and talk.

The Help Simon campaign, which was created by the Crokes and is supported by the Cure Sanfilippo Foundation, opened last November. It features a three-minute video the foundation helped produce that was made in hopes of spurring donations for the nonprofit, which funds scientific investigations and supports families.

When the “reaction” video was published on March 16 and began making the rounds, the couple’s GoFundMe account was at $107,168. As of the date of this publication, some 7,700 donors had brought the total to more than $320,000.

More than 2.8 million people have viewed the video, which has garnered more than 428,000 “likes” and has been shared more than 16,000 times on multiple social media platforms. The video has attracted the support of retired professional women’s basketball player Chantel Tremitiere, TikTok challenge creator Alex Presley, and singer/songwriter Forest Blakk.

“We are absolutely amazed and so grateful for all the support,” Alina Croke said in a foundation press release. “People from all parts of the world are hearing Simon’s story and lending their support to help fund research that could help him.”

One of the two experimental treatments is CLR01, which has been shown to reduce neuroinflammation levels and lessen memory deficits in MPS-IIIA (Sanfilippo syndrome type A) mice.

The Help Simon effort also is funding research into the use of transplanted human neural stem cells to express and secrete the enzyme sulfoglucosamine sulfohydrolase, which is absent in Sanfilippo. A proof of concept study in an animal model was completed last April.

There are no guarantees, but the hope is that $1 million would help get the preclinical investigations into clinical trials — those involving human patients — faster.

The metabolic disease, which causes toxic storage materials to build up in the brain, slows pediatric development, and ultimately causes developmental regression.

Those interested in learning more and donating to the cause can visit the Help Simon GoFundMe or the family’s Facebook page.