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.
Relevant Press Releases & Information
The family of Connor Dobbyn created a video time capsule to document the many efforts and many, many kind people it took for the Save Connor campaign to reach $1 million. All to help fund the first-ever gene therapy clinical trial for Sanfilippo Syndrome Type C.
The parents of Connor Dobbyn have shared a heartfelt message to supporters, announcing that the Save Connor campaign to fund the first-ever gene therapy clincial trial for Sanfilippo Syndrome Type C has reached $1 million. The announcement comes days after Connor...
Current campaign is nearing the $1 million mark to fund a first-ever clinical trial Cure Sanfilippo Foundation is on track to raise another $1 million via a GoFundMe fundraiser for research and clinical trials to cure Sanfilippo Syndrome. This is the third...
Most 12-year-olds are dreaming of what they want to be when they grow up, navigating school cliques, and still enjoying the waning days of childhood innocence. This group of 12-year-olds have known Connor Dobbyn since kindergarten. Long before he was diagnosed with...
Connor Dobbyn is 12-years-old and has a degenerative and fatal disease called Sanfilippo syndrome. But there is hope in a clinical trial that lacks funding. Connor's parents, Marisa DiChiacchio and Mike Dobbyn, have set out to fund the clinical trial and give Connor a...
Connor Dobbyn was diagnosed with Autism at age 5. "We thought we hit the nail on the head with this diagnosis," said Connor's mom Marissa. "However, it wasn't until an annual IEP at school that they found it to be something much worse." Connor went from having an IQ...
- “11-year-old from Bowdoin raffles off a bike he won to help boy with rare disorder” NBC News Center Maine; July 28, 2021
- “Save Connor campaign reaches $1 million mark” Canton Citizen; July 9, 2021
- “Community Rallies For Philly Area Boy With Childhood Alzheimer’s” Daily Voice; June 23, 2021; by Nicole Acosta
- “Push To Save 13-Year-Old Connor Dobbyn, Fighting ‘Childhood Alzheimer’s,’ Heats Up With Fundraiser For Clinical Trial” CBS3 Philly; June 22, 2021; by Jasmine Peyoute
- “Canton native continues push to save his son” The Canton Citizen; April 15, 2021; by Candace Paris
- “Save Connor Fundraiser on PA live!” PA Live! by Haley Bianco; March 16, 2021
- “Their 12-year-old has childhood ‘Alzheimer’s.’ $3 million is their only hope for saving him.” WPMT FOX43 by Megan Yoder; March 12, 2021
- “‘Save Connor’ Campaign Ramps Up Ahead of Deadlines.” Sanfilippo News; March 4, 2021
- “Autism and Sanfilippo Syndrome: a Heart-Wrenching Journey to Diagnosis.” Autism Parenting Magazine; Dec. 14, 2020
- “Lowcountry CrossFit Gym works out to raise money, awareness for rare pediatric disease.” Live 5 News WCSC, a CBS affiliate; Dec. 12, 2020; by Kyle Jordan
- “Hosting The Holidays – Pit Stop w/Traffic Jam Jimmy Ep. 11.” WBFF FOX45 Baltimore; Dec. 10, 2020; by Traffic Jam Jimmy
- “Crowdfunding a Clinical Trial? Family Aims to Raise $3M to Treat Son’s ‘Childhood Alzheimer’s’.” Being Patient; Dec. 7, 2020; by Hanna Nelson
- “An anonymous note, a little cash, and a moment of moral clarity in the U.S. mail.” Philadelphia Enquirer; Dec. 5, 2020; by Maria Panaritis
- “Belmont family fights for clinical trial addressing daughters’ rare diagnosis.” WCVB-5 Boston ABC; Nov. 25, 2020; by Emily Riemer
- “Race Against Time for Boy Battling Rare, Alzheimer’s-like Illness.” U.S. News & World Report; Nov. 2, 2020; by Dennis Thompson
- “Boy, 12, with ‘childhood dementia’ desperate for ‘one chance to change his fate.” Daily Mirror UK; Oct. 26, 2020; by Danya Bazaraa
- “100% fatal’: Family’s fight to save boy, 12, with ‘kids Alzheimer’s.” Yahoo! News Australia; Oct. 24, 2020; by Brianne Tolj
- “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, 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 Taproot Photography for the images with “Taproot Photography” noted in the file name.
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