January, 2020
	New Year’s Resolutions
	Researchers talk about the treatment & management of JDM
	A Profile in Leadership
	Walk Strong®
	Upcoming Events

NEW YEAR’S RESOLUTIONS

Jim Minow

Executive Director Jim Minow

On this first day of 2020, I’d like to extend my thanks and gratitude to our Cure JM families, doctors and researchers here in the U.S. and around the world. Your partnership with Cure JM has made everything we have accomplished for our JM kids possible.

The Cure JM story — the story of how in just 16 years we have moved from Tom and Shari Hume’s lemonade stand to become one of the most effective and respected research and clinical support organizations — inspires us all to carry on the fight. We could not have accomplished so much without our families by our side.

I often spend the last days of the year and the morning of New Year’s Day on a few personal and professional resolutions. I like to consider what more can be done over the next year to make the world — and the world of my loved ones — a better place. For 2020, I settled on five resolutions for Cure JM that we pledge to fulfill.
I want to share these resolutions with you.

We are resolved to test and advance new compounds or repurposed drugs and assure their availability to JM warriors at the earliest possible date.

We are resolved to support more clinicians and researchers who dedicate their careers and expertise to improve the quality of care and the lives of JMers everywhere.

We are resolved to provide our families with better and more comprehensive information to help all parents in caregiving and patient advocacy for their JM child.

We are resolved to advance our knowledge of the genetics and other causes of JM to better understand the root cause of the disease, which will lead us closer to a cure.

We are resolved to building an organization — Cure JM — that is not only a beacon of hope, but is an organization ready to take the JM journey side by side with every JM child and family in need of help and support.

I’m looking forward to doing all I can to make 2020 Cure JM's most successful year ever. I know you are, too. Again, my thanks for all you have done to advance our shared cause.

With appreciation,

Jim
Jim Minow
Cure JM Executive Director

WHAT RESEARCHERS SAY ABOUT THE TREATMENT AND THE MANAGEMENT OF JUVENILE DERMATOMYOSITIS (JDM)

The diagnosis of Juvenile Dermatomyositis raises a lot of questions. Patients and families wonder, how do I know what is the best treatment plan?

A treatment plan is based on many factors, including the severity and expression of the JDM. Each case is different, and the symptoms can change over time. Some patients suffer more skin rashes, and others suffer from more muscle weakness. Physicians create treatment plans to address individual needs, but all plans are designed to provide the greatest benefit to the patient and minimize side effects.

Recently, some of the best physicians in the world that diagnose and treat JDM patients pooled their collective experience and published a series of consensus plans to standardize and optimize treatment for a variety of JDM patients. These plans can help you discuss treatment options with your doctor.

The plans are divided into categories, which are based on patient diagnosis.

Read about the plans here.

A PROFILE IN LEADERSHIP

Christy and her family, including son Taran, who was diagnosed with JM 10 years ago.

“My son Taran was diagnosed with JM 10 years ago, in 2009, when he was 4 years old. Upon his diagnosis, we not only searched for who could provide the best care for him, we also looked for who could provide support for us. We were fortunate to find Cure JM so quickly and went to our first meeting in February, 2010. Within a few years, we had found a new place to live, moving from Arkansas to Oregon, and found a doctor we could trust.

We wanted to do more, we wanted to help provide the much-needed research to make the lives of people with JM better. The Holiday Challenge offered us the opportunity to do that. By raising money, we support the research that wasn't getting done. The holidays are times of family, peace and giving. Tying this feeling with fundraising just make sense to me. Over the years, I’ve realized that even $5 adds up to big opportunities.

Each of us has a chance to make a difference. No matter how small you start, your changes add up and become impactful. Being involved in Cure JM gives me back the control that I lost when Taran was diagnosed. I can't Cure JM by myself, but all of us working together can make real and lasting change. I hope we can cure JM and provide families of other diseases a framework on how to enable change for the challenges they are facing.”

- Christy Perel