Encinitas foundation fights for juvenile myositis cure

Encinitas parents Shari and Tom Hume have a lot to be thankful for this holiday season.

Although diagnosed with an autoimmune disease, their son, Parker, is an otherwise happy and healthy high school senior. And the nonprofit they created in his honor, Cure JM Foundation, is raising awareness about juvenile myositis and raising funds to find a cure.

“People genuinely want to help,” said Tom Hume, whose family of five has lived in Encinitas for about 12 years.

Juvenile myositis, including juvenile dermatomyositis and juvenile polymyositis, is a group of rare and life-threatening autoimmune diseases, in which the body’s immune system attacks its own cells and tissues.

Juvenile myositis affects about 3,000 to 5,000 children in the United States. Symptoms can include muscle weakness, skin rashes, fatigue and fever and, in more serious cases, heart and lung damage. The fatality rate is low at less than 5 percent, but the treatment is often aggressive.

Up until he was eased off medication a few years ago, Parker had more than 500 hospital visits, dozens of chemotherapy treatments and took up to 15 pills a day. Now a 17-year-old senior at Cathedral Catholic High, Parker is in remission, but has had some muscle damage and a sunburn or virus could ignite a dangerous flare-up.

“It can be debilitating and it can be fatal in some cases,” Shari Hume said. “It’s very rare and there’s no cure.”

Parker was 3 years old when the Humes first noticed his lack of energy.

“He was a normal rambunctious child,” Shari Hume recalled. “All of a sudden, he started sleeping more. He stopped eating as much. He was getting cranky. Then he started falling.”

After six months of tests, Parker was diagnosed with juvenile dermatomyositis in 2002. He was 4 years old.

A year later, the Humes founded Cure JM Foundation.

“At the time, there wasn’t a lot of medical research going on and we realized there wasn’t an organization set up to support this disease,” Shari Hume said. “Upon understanding that research and support groups were so rare — as rare as the disease itself — we felt completely powerless. In the face of adversity, we saw that Parker was showing so much courage, strength and resilience, and we were inspired to do something.”

The couple partnered with Harriet Bollar of Vista, a grandmother of a child with juvenile myositis to create the nonprofit. Since then, Cure JM Foundation has raised $10 million for the cause.

Practically every penny goes to research and outreach, as the nonprofit is nearly all volunteer run. There is only one staff member. The Humes do not take salaries and Shari manages the foundation from their Encinitas home.

Funds have supported 120 research studies and helped establish research and treatment centers in Chicago and Washington, D.C. The nonprofit also funded the first-ever book about juvenile myositis and continues to host annual educational conferences for both doctors and the families of juvenile myositis patients. The next Cure JM Conference will take place Jan. 15-17 in St. Pete, Florida.

Although Cure JM Foundation ultimately aims to find a cure, the nonprofit was also established to raise awareness about the rare disease. According to the organization’s patient registry, it took about nine months for a diagnosis when the foundation first launched. Today, children, on average, are diagnosed within five months.

“By increased awareness, we’ve been able to lower that diagnosis time,” Shari Hume said.

Cure JM Foundation got a big boost in awareness and funds earlier this month when the nonprofit raised more money than 1,000 competing charities in the CrowdRise Holiday Challenge. By raising more than $212,000 on Giving Tuesday, the organization won a $25,000 grant. If Cure JM Foundation stays in first place through Jan. 7, the nonprofit will win an additional $100,000.

As of Dec. 21, the nonprofit has raised more than $295,000. To contribute to the fundraising campaign, visit www.crowdrise.com/curejmgivingtower.

“The whole community just really rallies together,” Shari Hume said. “Even though our disease is so rare, the community pulls together. What we lack in size, we make up for in passion and perseverance.”

For more about Cure JM Foundation, visit www.curejm.org.