Alina and Jeremy Croke, the parents of 5-year-old Simon, are hoping that a viral video called “Help Simon” will help fundraise for two promising research pathways that could benefit Simon and other children with Sanfilippo.
People from around the country and world, most of whom are strangers, are watching the video and are donating to help the research happen. They are helping Simon race against this rapidly-degenerative disease that is impacting him more and more every day and will erode his amazing basketball skills.
Research is his only chance to live. The video and fundraiser are at HelpSimon.com.
Press Releases & Website Articles
On Tuesday, Chive Charities kicked of a first-of-its-kind fundraiser to help Simon and other children with Sanfilippo Syndrome. Chive Charities, a 501(c)3 organization, traditionally supports the direct needs of underserved veterans, military families, first...
Would you believe me that TikTok is a place filled with amazing, kind-hearted people? I know because we’ve experienced it. “Will you watch it with us?” With this six-word invitation, millions of people on TikTok opened their hearts and joined my husband Jeremy...
2.6M views: TikTok community rallies around ‘Help Simon’ parents hoping to save their little boy, who has amazing basketball skills
A TikTok video has inspired people to donate more than $63,000 in the past six days to the couple’s GoFundMe account On Wednesday, March 16, Alina and Jeremy Croke shared their raw and emotional reaction to watching a video for the first time that they hoped...
"Help Simon," a viral videao aiming to raise $1 million for two promising research pathways for Sanfilippo Syndrome Type B, has raised more than $50,000 since it's launch on World Sanfilippo Awareness Day last week, Nov. 16.Media Attention for Help Simon It has also...
5-year-old boy’s phenomenal basketball potential will go unrealized unless a treatment is found for Sanfilippo Syndrome
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...
- Kendra Scott, Chipotle holding birthday fundraising events for 5-year-old battling rare disease. FOX 7 Austin; May 11, 2022
- Parents film 5-year-old’s unbelievable basketball skills in desperate attempt to save his life: ‘Will you watch this with us?’. Yahoo! News; March 29, 2022; by Cassie Morris
- Parents’ Video About 5-Year-Old Son With Dementia Leaves Internet ‘Bawling’. Newsweek; March 21, 2022; by Alice Gibbs
- Simon’s Shot: Austin boy fights for survival, captivates audience with basketball talents. KVUE Austin; Feb. 12, 2022; by Jake García
- Austin family hopes son’s love for basketball will help save his life. FOX 7 Austin; Jan. 26, 2022; by Amanda Ruiz
- 6 Children Who Will Inspire in 2021: Genius IQs, Entrepreneurs, and Chess Masters. Ceng News; Dec. 31, 2021; by Jeff Sale
- Parents’ Help Simon Campaign Aims to Raise $1M to Find Cure for Son, 5. SanfilippoNews.com; Dec. 9, 2021; by Hawken Miller
- My 5-Year-Old is Amazing at Basketball—But He Has Childhood Dementia. Newsweek; Dec. 8, 2021
- Simon the Basketball Sensation: Help Austin boy fight for a chance to live and play. CBS Austin; Dec. 8, 2021; by Allison Miller
- ‘It’s like Alzheimer’s for children’: 5-year-old in Austin has Sanfilippo Syndrome. Fox 7 Austin; Dec. 6, 2021; by Amanda Ruiz
- Help Simon And Others Find A Cure For Sanfilippo Syndrome. Right This Minute; Dec. 1, 2021; by Will Hirsch
- Seeking the million-dollar answer: Austin parents calling on worldwide support in fight for their only child’s life. Austin Journal; Nov. 24, 2021; by Savannah Howe
- Treatment in Texas: For families of kids with rare diseases, it’s a full-time job to advocate for, raise millions for research. NBC-affiliate KXAN Austin; Nov. 24, 2021; by Grace Reader
- A plea for help from a local mom whose son has a rare disease. Nanahood.com; Nov. 23, 2021; by Teresa Bell Kindred
- Local family shares story, raises funds to research sure for Sanfilippo syndrome. Yahoo! News; Nov. 23, 2021; by Bri’on Whiteside
- Local family shares story, raises funds to research sure for Sanfilippo syndrome. The Toledo Blade; Nov. 22, 2021; by Bri’on Whiteside
For Media Outlets
Help Simon PhotosHigh-resolution files of the following photos, plus additional professional and personal photos, are available for use in your content. Access and download the images at this link. Please include photo credit to Amy Mikler Photography for the images with “Amy Mikler Photography” noted in the file name.
If you are interested in more information about the Help Simon campaign, the promising research, or Sanfilippo Syndrome, experts are available to speak with you. Email Katie Walton at Katie@CureSanfilippoFoundation.org if you would like to connect with them.
Available for interview:
Jeremy & Alina Croke, Parents of Simon
Available for interview to discuss about Simon, the journey to diagnosis, and Help Simon
Jeremy and Alina were born and raised in Toledo, Ohio, and met via a mutual friend on the patio of El Camino Real in 2004. They moved to Austin, Texas, in 2007 and were absolutely delighted when Simon was born 2016. Jeremy is an Account Executive for NetSuite. Alina manages Simon’s schooling and multiple daily therapies.
Glenn O’Neill, President & Co-Founder, Cure Sanfilippo Foundation
Available for interview via Zoom to discuss the Foundation, research on Sanfilippo, and the Help Simon campaign
Glenn is the father of Eliza O’Neill, who was diagnosed in 2013 with Sanfilippo Syndrome (MPS III). He and his wife Cara co-founded the 501c3 non-profit Cure Sanfilippo Foundation with a mission to advocate and fund research for treatments or a cure for all Sanfilippo Syndrome children. He believes the mission will be achieved through kindness, humility, transparency, vulnerability, inspiration, and determination, and has found collaboration with like-minded people and organizations is the key to success.
In seven years, the Foundation has grown to include more than 80 families of children with Sanfilippo Syndrome and helped fund more than 20 grants around the world so far.
Glenn was the 2017 Sanofi Genzyme Torch Award winner and received the 2017 GoFundMe Trailblazer award. Glenn and Cara were awarded the Portraits of Courage Honor by the National Organization of Rare Disorders in 2015, as well as a Tribute to Champions of Hope finalist for Global Genes. In 2017, they received the South Carolina Child Advocate Award from the SC American Academy of Pediatrics.
- Sanfilippo Syndrome is like Alzheimer’s, but in children.
- Sanfilippo Syndrome 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.
- 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.
- Currently there is no FDA-approved treatment or cure for Sanfilippo Syndrome.
- Children are born with Sanfilippo Syndrome, but it is invisible until they start exhibiting developmental delays or regression in their early years.
- Early symptoms of Sanfilippo Syndrome are often: speech delays, frequent ear infections, poor sleep, “Autistic” behaviors, and hyperactivity.
ABOUT THE RESEARCH:
- Cure Sanfilippo Foundation has identified and begun funding 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.
- The hope is that both of these projects yield positive results and move toward a clinical trial for children.
Donations to HelpSimon.com go directly to Cure Sanfilippo Foundation, which is funding these research projects.
ABOUT CURE SANFILIPPO FOUNDATION
- Cure Sanfilippo Foundation, a 501(c)3 non-profit (Tax ID 46-432131), leads in driving research to accelerate discovery of a cure for Sanfilippo Syndrome.
- “Help Simon” donations go to Cure Sanfilippo Foundation, which is funding the clinical trial.
- Learn more about the Foundation.
- Cure Sanfilippo Foundation has partnered with other families to conduct million-dollar campaigns — Saving Eliza, Saving Carter, and Save Connor — that have been covered by the TODAY Show, People, Inside Edition, The Doctors, and Fox News.
Special thanks to the artists, who graciously dedicated their time and talent to create Help Simon:
Video Footage by Paul Shirley | https://www.paullikescameras.com/
Video Editing by Benjamin Von Wong | http://www.vonwong.com
Original music by KeithTim Anderson | http://www.keithtim.com
Audio mastering by Andrew Kesler | http://www.andrewkesler.com
Photography by Amy Mikler Photograph | https://amykenyon.photography/