The parents of Connor Dobbyn, Marisa DiChiacchio and Mike Dobbyn, are using a viral video called “Save Connor” to fundraise $3 million for a clinical trial for Sanfilippo Syndrome Type C that could save their son’s life, but lacks funding.
People from around the country and world, most of whom are strangers, are watching the video, which launched Oct. 16 during the Chelsea Film Festival, and are donating to help the clinical trial happen. They are helping Connor race against this rapidly-degenerative disease that is impacting him more and more every day.
This is his only chance to live. The video and fundraiser are at SaveConnor.com.
Watch the “Save Connor” Viral Video
To watch Save Connor, go to SaveConnor.com.
Relevant Press Releases & Information
FOR IMMEDIATE RELEASE MEDIA CONTACT: Glenn O’NeillPresident & Co-FounderCure Sanfilippo FoundationGlenn@CureSanfilippoFoundation.org(803) 413-0525 Columbia, SC (Oct. 17, 2020) – More than 1,600 people have been moved by the "Save Connor" viral video and...
‘Save Connor’: Parents using viral video to overcome the single obstacle in the way of saving their son’s life: $3 million
FOR IMMEDIATE RELEASE MEDIA CONTACT: Glenn O’NeillPresident & Co-FounderCure Sanfilippo FoundationGlenn@CureSanfilippoFoundation.org(803) 413-0525 Columbia, SC (Oct. 16, 2020) - The parents of Connor Dobbyn, Marisa DiChiacchio and Mike Dobbyn, are using a viral...
In spring 2019, Connor Dobbyn's parents were told their son had Sanfilippo Syndrome, Type C (one of the rarest types), and that it will take his life. Like Alzheimer's in children, Sanfilippo will cause Connor to lose all the skills he’s gained, stop speaking and...
Cure Sanfilippo Foundation funds $380,000 to Phoenix Nest Inc. to support path to first-ever MPS IIIC Gene Therapy COLUMBIA, SC (May 15, 2020) — Cure Sanfilippo Foundation is thrilled to announce funding of $380,000 to the New York-based biotechnology company Phoenix...
- “Chester County boy fights Sanfilippo Syndrome.” Fox 29 Philadelphia; Oct. 23, 2020; by Mike Jerrick and Alex Holley
- “Parents of Boy with Brain Disorder That’s ‘100 Percent Fatal’ Raise Money for Gene Therapy Clinical Trial.” PEOPLE.com; Oct. 21, 2020; by Ashley Boucher
- “Push for ‘Childhood Alzheimer’s’ cure for Connor Dobbyn took a scary pandemic pause.” The Philadelphia Inquirer; Oct. 21, 2020; by Maria Panaritis
- “Chester County Family Fighting To Save 12-Year-Old Son’s Life After Rare Disease Diagnosis.” CBS Philly Channel 3; Oct. 21, 2020; by Joe Holden
- “Canton native goes ‘all-in’ in quest to save his son.” The Canton Citizen, Oct. 2, 2019; by Jay Turner
- “‘He never gets sad’: Connor has ‘Childhood Alzheimer’s’ and his little buddies are his rock.” The Philadelphia Inquirer; Feb. 20, 2020; by Maria Panaritis
- “Chester County family discusses son’s experience with disease likened to childhood Alzheimer’s.” Good Morning, Philadelphia, Fox29; Feb. 12, 2020
- “Inquirer readers donate nearly $20,000 to save Connor Dobbyn from ‘Childhood Alzheimer’s’.” The Philadelphia Inquirer; Jan. 30, 2020; by Maria Panaritis
- “A Chester County boy and his family are seeking help against childhood Alzheimer’s.” The Philadelphia Inquirer; Jan. 26, 2020 (Sunday edition); by Maria Panaritis
For Media Outlets
Save Connor Photos
High-resolution files of the following photos are available for use in your content with attribution to Taproot Photography. Email Katie Walton at Katie@CureSanfilippoFoundation.org to request the high-resolution image files.
If you are interested in more information about the Save Connor campaign, the clinical trial, 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:
Marisa DiChiacchio, Mother of Connor
Available for interview via Zoom to talk about Connor, the path to diagnosis, and Save Connor
Marisa is mother to 12-year-old Connor and 10-year-old Keenan. She lives in Chester County, PA, and works as a Senior Consultant in HR Search & Recruitment for the New York-based Frazer Jones/Maximum Management. She is a graduate of Saint Joseph’s University and alumna of Alpha Phi.
Michael Dobbyn, Father of Connor
Available for interview via Zoom to talk about Connor, the path to diagnosis, and Save Connor
Michael is father to 12-year-old Connor and 10-year-old Keenan. He lives in Chester County, PA, and works as a Senior Financial Advisor for Merrill Lynch. He is a graduate of Duke University.
Dr. Cara O'Neill, Chief Science Officer & Co-Founder, Cure Sanfilippo Foundation
Available for interview via Zoom to discuss Sanfilippo Syndrome, gene therapy, and the clinical trial
Cara completed her medical education at West Virginia University School of Medicine and subsequently her Pediatric Residency training at the University of South Carolina. She has worked both in private practice and academic settings. During her tenure as an Assistant Professor of Clinical Pediatrics at the University of South Carolina, she practiced in a clinic specific to children with special healthcare needs. These uniquely-paired career and life experiences allow her to bridge gaps between scientists, clinicians, industry, and families, helping foster patient-centered research and translational paths forward for rare disease treatments.
She and her husband founded Cure Sanfilippo Foundation after receiving her daughter’s diagnosis in 2013. Since then, they have spread awareness around the globe about Sanfilippo Syndrome via talk shows, news media, online platforms, and international newspapers.
As Chief Science Officer, Cara leads the Foundation’s patient-focused research efforts and has presented at international conferences and authored peer-reviewed journal articles. In addition, she collaborates with other non-profit groups on mutual advocacy and research interests, as well as oversees the foundation’s funding of external scientific programs.
Cara was awarded the international 2020 Patient Advocacy Leader Award by WorldSymposium for her exceptional thought leadership and contributions. 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.
Glenn O’Neill, President & Co-Founder, Cure Sanfilippo Foundation
Available for interview via Zoom to discuss the Foundation, Save Connor campaign, and past million-dollar campaigns
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.
Dr. Berge Minassian, Head of Pediatric Neurology at the University of Texas Southwestern
Available for interview to discuss UT Southwestern’s involvement in the clinical trial
Berge A. Minassian, M.D., is a Professor in the Departments of Pediatrics and Neurology at UT Southwestern Medical Center.
Dr. Minassian is a pediatric neurologist whose clinical specialties are epilepsy, neurodegenerative diseases, and neurogenetic conditions.
The Chief of Child Neurology at UT Southwestern, he also leads the Neurosciences Center at Children’s Health in Dallas. He serves on the faculty of the Children’s Medical Center Research Institute at UT Southwestern, as well.
Minassian has been active in neurogenetics research for his entire career.
- Sanfilippo Syndrome is like Alzheimer’s, but in children.
- 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.
- 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.
- Learn more about the causes and signs of Sanfilippo Syndrome.
ABOUT THE CLINICAL TRIAL
- Clinical trials are where the rubber meets the road, scientifically. It’s the crucial step of determining whether earlier research is able to show the same therapeutic benefits in children.
- All the steps are lined up for this trial. The only thing needed is funding.
- Cure Sanfilippo Foundation funded $380,000 in May to support creation of plasmid (a critical component of gene therapy drug production), as well as the required in-vivo efficacy study in the MPS IIIC mouse model. These are a part of critical steps that enable the project to be evaluated by the U.S. Food and Drug Administration (FDA) for approval to proceed with a clinical trial.
- Pending funding, the trial team is planned to work at the University of Texas Southwestern in Dallas, Texas.
- Drug production (gene therapy medicine) is planned at ViralGen and Aldevron
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.
- “Save Connor” 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 and Saving Carter, 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 Save Connor:
Video by Benjamin Von Wong | http://www.vonwong.com
Photography by Taproot Photography | http://www.taprootphotos.com
Original music by KeithTim Anderson | http://www.keithtim.com
Audio mastering by Andrew Kesler | http://www.andrewkesler.com