Saving Veda

Save Connor

The Basics

Christin and Jericho Ulrich, parents of 4-year-old Veda, are hoping that a viral video called “Saving Veda” will help fundraise for a new clinical trial for children with Sanfilippo Syndrome.

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 Veda race against this rapidly-degenerative disease that is impacting her every second of every day.

Research is her only chance to live. The video and fundraiser are at SavingVeda.com.

Media Coverage

For Media Outlets

Saving Veda 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.

For photo credits, please credit Benjamin Von Wong for the images with “Von Wong Photography” in the file name, J.Blanch Photography, Inc for the images with “J.Blanch Photography” in the file name, Ulrich Family for images with “Family Photo” 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 Saving Veda 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
Christin & Jericho, Parents of Veda

Christin & Jericho, Parents of Veda

Available for interview to discuss Veda, the journey to diagnosis, and "Saving Veda" campaign

Christin has an associates degree in Diagnostic Medical Sonography/Sonographer and Ultrasound Technician from Keiser University. She works as a Diagnostic Medical Sonographer for a regional healthcare organization. Jericho has an associates degree in Machine Tool Technology/Machinist and works as a Machine Shop Supervisor for a global industrial-machinery manufacturing company. They live with Veda and oldest daughter Elise in a city near Daytona Beach, Florida.

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 "Saving Veda" 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 501(c)3 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, inspiration, and determination … and has found collaboration with like-minded people and organizations is the key to success.

In nine years, the Foundation has grown to include more than 150 partner-families of children with Sanfilippo Syndrome and helped fund research grants around the world, leading to three clinical trials for children, 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 is working with an institution to launch a clinical trial that would treat several children with Sanfilippo.
  • Donations to SavingVeda.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.
  • “Saving Veda” donations go to Cure Sanfilippo Foundation, which is helping fund the research.
  • 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 contributed their time and talent to create Saving Veda:

— Video Footage by Eva Philippe Petit and Quinn Michael Reeder

— Video Editing by Benjamin Von Wong

— Original music by KeithTim Anderson

— Audio mastering by Andrew Kesler

— Photography by the Ulrich family, J.Blanch Photography, Benjamin Von Wong, and Amanda Joann Photography