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Help Simon

Save Connor

The Basics

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

Media Coverage

For Media Outlets

Help Simon Photos

High-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.
Save Connor - viral video to save Connor from Sanfilippo Syndrome
Save Connor - viral video to save Connor from Sanfilippo Syndrome
Save Connor - viral video to save Connor from Sanfilippo Syndrome
Save Connor - viral video to save Connor from Sanfilippo Syndrome
Save Connor - viral video to save Connor from Sanfilippo Syndrome
Save Connor - viral video to save Connor from Sanfilippo Syndrome

Contact Information

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

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

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.

Talking Points:

ABOUT SANFILIPPO:

  • 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.

Credits

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/