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 million-dollar campaign Cure Sanfilippo has conducted via GoFundMe. The three campaigns have collectively raised nearly $4 million using the GoFundMe platform.
All of the campaigns tell an individual family’s story and hope for a different future for their child with Sanfilippo. Each campaign is anchored by a touching three-minute video, created by viral video storyteller Benjamin Von Wong.
The first of which, Saving Eliza (SavingEliza.com), went viral in 2014 and became the first-ever GoFundMe campaign to raise $1 million and $2 million on the platform. It featured the O’Neill family’s desperate fight to fund a clinical trial that was their daughter Eliza’s only chance. The donations it raised helped fund the first-ever gene therapy clinical trial for Sanfilippo Types A and B, which has now treated about 30 children and is still underway. The hope is this therapy will continue moving closer to FDA approval, so more children have access.
In 2018, Cure Sanfilippo partnered with the Sarkar family to launch another video campaign, “Saving Carter” (SavingCarter.com). Saving Carter raised more than $1 million in just over a month. It was supported and shared by top Hollywood celebrities, such as Oprah, Selena Gomez, Katie Perry, Mark Wahlberg, and Madonna. Those dollars helped fund another new clinical trial, in the hopes that reducing inflammation in the brain and body of children with Sanfilippo will improve their quality of life. This trial is underway and treating 20 children of all ages and with all types of Sanfilippo.
The current campaign, “Save Connor” (SaveConnor.com), which launched October 2020, features Connor Dobbyn and his parents’ fight to raise $1 million for the first-ever gene therapy clinical trial for Sanfilippo Type C. The Save Connor campaign has already raised $800,000 and hopes to raise the final $200,000 by June 21, Connor’s 13th birthday. Pre-trial work has already begun, and there are contracts that must be paid to keep the clinical trial on schedule.
“In 2014, we were just parents desperate to save our daughter, and GoFundMe provided us an outlet for sharing our story and empowering people with a way to help. We hoped funding the clinical trial would be possible. And because of thousands and thousands of kind people who heard our story, donated to help, and shared our need with others, we succeeded and were able to help fund the clinical trial for many children,“ said Glenn O’Neill, Eliza’s father and co-founder of Cure Sanfilippo Foundation.
“We continue partnering with GoFundMe because it provides an easy and personalized way for the Foundation and families to share their stories in order to accelerate research to cure Sanfilippo Syndrome,” said O’Neill.
To commemorate the record-setting impact of the Saving Eliza campaign, GoFundMe dedicated its board room in honor of Saving Eliza.
To date, Cure Sanfilippo Foundation has raised more than $10 million for its mission to advocate and fund research to bring about treatments and/or a cure for Sanfilippo Syndrome. Cure Sanfilippo has funded more than 30 research grants around the world which has helped three clinical trials get underway, to date, treating children with Sanfilippo Syndrome. The Foundation creates and explores innovative and breakthrough research to ensure multiple promising paths are being explored in the effort to save children and better their quality of life.
In addition to funding research, the Foundation focuses on: 1) working with the U.S. Food and Drug Administration and biotechs regarding appropriate clinical trial endpoints and ensuring the caregiver voice is being incorporated every step of the way; 2) earlier diagnosis, diagnostic testing, and newborn screening; and 3) providing guidance and support to families for navigating the landscape of clinical trials, insurance and physician support.
Update
June 30, 2021: The “Save Connor” campaign surpassed its $1 million goal, which brings the Foundation’s total raised via GoFundMe above $4 million.