Connor’s Crew: Children racing against time to save their best friend’s life

May 14, 2021

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 Sanfilippo Syndrome, 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 in their teens.

Instead of the “normal” preoccupations of 12-year-olds, these kids are focused on saving their friend’s life. This band of friends, who have proclaimed themselves “Connor’s Crew,” has been desperately fundraising for the first-ever gene therapy clinical trial that could save Connor’s life. They have done 5ks, a steps challenge, a ballet show, apparel sales, school fundraisers, personal fundraisers, and more.

It’s a beautiful thing to see. It’s also heartbreaking to see them shoulder the fight to save a friend’s life.

A NEW TWO-MINUTE VIDEO sharing the heart-warming story and urgent mission of “Connor’s Crew” has been launched. It features interviews with Crew member Sylvia and her mom.

In the video, the Crew is asking people to help them Save Connor. Their goal is to help the Save Connor campaign. reach $1 million by June.

One million is needed by the end of June to ensure that two critical steps of the first-ever gene therapy clinical trial for Sanfilippo Syndrome Type C (Connor’s type of Sanfilippo) can be paid and the trial stays on track. The steps include completion of final pre-clinical work and production of the gene therapy medication.

Time is of the essence because Sanfilippo is impacting Connor every single second in a negative way. You can’t see it, but it’s happening in his brain and body and will take every skill and ability he has away, such as walking, feeding himself, and even speaking.

All donations to are tax deductible and go to Cure Sanfilippo Foundation, a 501(c)3 non-profit (Tax ID 46-432131), which leads in driving research to accelerate discovery of a cure for Sanfilippo Syndrome.

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