Rain poured down in Juneau on Sunday, but that didn’t stop residents from going to Tracy’s Crab Shack for a night of music from the local band The High Costa Livin’. Under covered tents, attendees lined up for food and were surrounded by a silent auction, a raffle and a bake sale.
Tracy’s hosted one of more than 15 local fundraisers working to help a young Juneau resident go on a clinical trial for a rare genetic disease. Emma Jobsis is the mother of four-year-old Cade Jobsis.
“People that I haven’t even asked, I haven’t even talked to, are texting, calling, wanting to be a part of this,” she said. “And I’m just so grateful because there’s no way we could do this alone.”
She says fundraising efforts started a couple years ago, when Cade was diagnosed with SPG50, a rare disease where a child gradually loses their cognitive and motor function. There is no cure.
“When we got the diagnosis, the doctors told us to take him home, love him. There was nothing they could do,” Jobsis said.
But there is an experimental treatment that she says was developed by the father of a child with the same disease. Its creation had a hefty price tag. Jobsis said she and several other families raised the $3 million to create the treatment. For Jobsis, that was largely done through social media campaigns.
Now, the Juneau family is fundraising again so Cade can use the new treatment. They need to raise $1.15 million for hospital and regulatory fees to do a clinical trial for Cade. Jobsis said fundraising largely falls on families, despite her efforts to raise funds through the government and pharmaceutical companies.
“It’s not lucrative, and they’re never even going to see their money again,” she said. “So the only people that care to get treatments are parents of children that have this childhood disease. And so as parents, we came together — four families — and we said, ‘We have to do this. We have to raise the money, because nobody else is going to. Nobody else cares like we do.’”
The Juneau community has been responding in a big way. Jobsis said as of Sunday evening, they had raised $357,000. She said Cade can begin treatment in November if they have 80% of the funds in escrow by Oct. 20.
Juneau resident Kelsey Riker was at the event, eating dinner in the crowded tent. She’s the manager at Kindred Post, a local gift shop and post office. Riker said it’s great to see the community act in a huge way.
“While this community support has been such a bright light, I also think this should not be necessary for anyone, especially a little kid born with a thing that we don’t know much about,” Riker said.
But Riker said she wants to continue to be part of the effort to raise money.
“If there are ways to be fighting a very broken system by rallying around our community, then that is something that I want to be a part of,” she said.
Tom Ainsworth made his way into the tent with the festivities. He is a retired weather forecaster and said he’s glad to see everybody supporting the cause. He got emotional when he talked about why he came to support the family.
“Well, we have a grandson about the same age, and I can’t imagine going through what they’re going through,” Ainsworth said.
Jobsis estimated on Monday they raised another $50,000 from the weekend’s fundraisers. They have to raise about $738,000 more to reach their goal. The family will continue raising money for Cade’s treatment with fundraisers in and beyond Juneau.