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Cure JM Foundation 2014 Annual Conference Recap

The Experience of a First-Time Attendee

Just six weeks before the Cure JM National Conference in San Jose, Courtenay Ellis’ 4 year old daughter, Elle, was diagnosed with Juvenile Dermatomyositis, a form of Juvenile Myositis (JM). Courtenay and her family were in shock. 

“We were terrified,” says Courtenay.

“We felt alone and uninformed in a battle against a rare disease we had never heard of.”

Then Courtenay heard that Cure JM families and physicians were gathering in San Jose, CA for the 2014 National Conference.

The Ellis Family

“It was such an amazing experience to walk in so terrified and walk out with hope.”


“I was nervous to fly across the country to an event where I didn’t know anyone,” said Courtenay.

“But I decided to attend because my daughter was newly diagnosed and I was terrified and desperate to learn more. I knew if I didn't go, I'd always wonder if I had missed out on learning something that could help Elle.”

At the Cure JM Conference, Courtenay attended educational sessions about how to care for her child and her family, including a session just for newly diagnosed families. She also attended the General Session and heard the latest research updates directly from the researchers.

“I got so much out of the conference,” she says.

"This weekend was the first time I was able to breathe since my daughter was diagnosed. It was such an amazing experience to walk in so terrified and walk out with hope.”

Elle

Elle begins treatment for JDM

At the conference, Courtenay also connected with so many families who knew exactly what she was going through. “I met so many people, physicians and families, that I know will be a life-long support system,” she says.

“The conference also confirmed for me why the fundraising is so important,” says Courtenay. “I started fundraising out of a need to do something to help my baby. And at the conference, I learned that researchers rely on the funds raised by Cure JM families,” says Courtenay.

By sending out just one email to all of her friends and family, Courtenay has raised over $7,000 for Juvenile Myositis Research. Congratulations, Courtenay!

So now what is next for Courtenay and her family?

“We don’t know exactly where this journey with Juvenile Myositis will take us,” says Courtenay, “but I do know that I will not miss a Cure JM conference.”

Courtenay is already making plans to bring her daughter and family to the next Cure JM National Conference in St. Petersburg, FL, January, 2016.  More details coming soon to www.curejm.org/florida

“It felt so safe,” she says.

“I want to go back in a month.”