Cure JM Foundation Newsletter

March 2015

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Thanks to You, 2015 is off to a Great Start

JM Patient saying"Thank You!"

Your support makes it possible for Cure JM to set ambitious goals for 2015 and make real progress in Juvenile Myositis research, education and support.

Every year, Cure JM sets ambitious goals for progress in Juvenile Myositis research.

Because of supporters like you, we can report real progress in Juvenile Myositis research, education and support that will impact thousands who are living with the disease:

NEW Juvenile Myositis research is being conducted at the Mayo Clinic, Boston Children's Hospital, Children's Hospital at Montefiore and Seattle Children's Hospital
Patients are being seen and research continues at the two Cure JM Centers of Excellence -- at George Washington University Myositis Center in Washington, D.C. and at the Cure JM Program of Excellence in JM Research at Stanley Manne Children’s Research Institute, affiliated with Ann & Robert H. Lurie Children's Hospital of Chicago
Cure JM is expanding our physician education program, with the goal of helping to speed-up diagnosis time and improve patient outcomes

These are just a few of the significant milestones you are making possible in 2015. To learn more about the research you are making possible click here.

Although we all take pride in these accomplishments, we won’t stop until we have reached our ultimate goal of a world where nobody has to fear Juvenile Myositis or it’s complications.

Thank you for your commitment to improving the lives of all people living with Juvenile Myositis.

And thank you for your ongoing support!
Mitali Dave
President, Cure JM Foundation

Juvenile Myositis Studies NEED PATIENTS

JM Patient in Hospital

Volunteers are urgently needed for Juvenile Myositis research studies. With the rarity of Juvenile Myositis, participating in these studies is crucial to keep research moving forward.

You can help make promising research possible. Several Cure JM-supported research studies are crucially in need of patients:

Pediatric identical twins are urgently needed. Sets of twins are needed where one twin has Juvenile Dermatomyositis (JDM) and the other twin does not. For further information please call (312) 227-6277. Study conducted at the Cure JM Program of Excellence in JM Research at Stanley Manne Children's Research Institute, affiliated with Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL.

Join the Cure JM Patient Registry. This information is collected online and will be used by researchers as part of a demographic survey to determine if there are clusters of children affected by Juvenile Myositis (JM) in the same geographic area.

Pilot Calcinosis Study conducted at George Washington University, Washington, D.C. This is a study for treating calcinosis (calcium deposits in the skin) in individuals with Adult or Juvenile Dermatomyositis who have not responded to other treatments. Participants must be between the ages of 18-65 years, have stable disease which is mildly active or in remission, and have failed at least one therapy for superficial calcinosis. Please call (800) 411-1222.

Twin/Sibling Study conducted by the National Institute of Environmental Health Sciences (NIEHS) in Bethesda, MD. You may enroll at your local doctor's office, Bethesda, MD or in Research Triangle Park, NC. This is a study for families with siblings or twins in which one sibling has developed an autoimmune disease and the other has not. Now enrolling patients within 5 years of diagnosis. Siblings need to be of the same gender, within 5 years of age and without an autoimmune disease. There is no charge for study-related evaluations. Please call (800) 411-1222.

Microbiome Study conducted at Seattle Children's Hospital, Seattle, WA. Currently enrolling children with JDM who are less than 14 years old. Study participants must enroll either before any treatment has started or be off of immunosuppression for 3+ months and beginning to flare. Please call (206) 987-2057.

MYORISK Study conducted at the National Institutes of Health (NIH) in Bethesda, MD. You may be enrolled at your local doctor's office or a number of locations around the United States. Currently enrolling patients who were diagnosed in the last two years. Doctors at the NIH are conducting pioneering research into the environmental risk factors that could lead to myositis. Please call (800) 411-1222.

Study of Premature Atherosclerosis in Juvenile Dermatomyositis conducted at the Children's Hospital at Montefiore, Bronx, NY. Currently enrolling patients age 2-21 with a diagnosis of JDM. To be eligible patients cannot be currently using medications that alter lipid metabolism or endothelial function (including lipid lowering agents), be a smoker or have another chronic illness (other than JDM). Please call (718) 696-2405.

Click here for a complete list of research studies needing volunteers.

Congratulations, Benjamin!

Benjamin

Benjamin, now 15, is in remission and was voted MVP of his middle school baseball team. Congratulations, Benjamin!

After years of treatment for Juvenile Myositis, Benjamin, now fifteen, is healthy and enjoying school, friends and sports again.

“Honestly, baseball is life for me. I eat, sleep, and breathe baseball,” says Benjamin. “When I was diagnosed and I found out I couldn’t play, it was like I lost my best friend.“

Benjamin was diagnosed with Juvenile Dermatomyositis (a form of Juvenile Myositis) at age 10. He has endured years of aggressive treatment, including IV and oral steroids, chemotherapy and several other medications, often receiving multiple IV infusions per month.

But through it all he kept fighting to return to playing baseball.

“As time went by, I gained enough strength to play again,” says Benjamin. “Nobody ever asks me about my condition because I try hard and work hard.” And, that has paid-off. Benjamin was voted MVP of his middle school baseball team!

Benjamin’s advice for other kids battling Juvenile Myositis? “You can do anything you set your mind to. And don’t ever let your condition hold you back.”

Research that you help make possible shows that aggressive treatment is important in treating Juvenile Myositis. Thank you for helping get kids like Benjamin back on the baseball diamond and back to doing what they love.

Save the date: Cure JM Conference in Florida

Join over 80 Cure JM families, as well as prominent JM researchers, at the 9th Cure JM National Conference, January 15-17, 2016 in St. Petersburg, Florida.

The Cure JM National Conference will be January 15-17 in St. Petersburg, Florida.

Join over 80 other Cure JM families for a spirited weekend of knowledge, sharing and camaraderie. The St. Petersburg Conference is shaping up to be Cure JM's biggest and most exciting conference yet!

Some highlights will be:

Intimate break-out sessions about coping with real life issues facing JM patients, families and caregivers
An Educational Forum and Q&A with prominent Juvenile Myositis researchers
Special sessions for dads, moms and grandparents who care for children with JM
A Teens and Tweens cyber lounge and workshop on transitioning from pediatric to adult care
A Kids’ Fun Camp
The St. Pete Beach Classic, where Cure JM runners, walkers and volunteers will help raise funds for JM research. This is a high point of the weekend!

Learn more here or contact us at or (780) 487-1079.

Welcome Kristine Alderfer to the Board of Directors

Kristine Alderfer and her family have all been active in Cure JM since 2010. Kristine brings a wealth of talent to her new role on the Board of Directors.

Please join us in congratulating Kristine Alderfer who has joined the Cure JM Board of Directors.

Kristine and her family have been active in Cure JM since 2010. In 2013 Kristine was named a Cure JM Hero for her outstanding efforts to raise awareness of JM and to raise funds for JM research.

“We are very excited to have Kristine step up to a bigger role on the Cure JM team,” says Cure JM Chairman Rhonda McKeever. “Kristine’s proven efforts to raise awareness and passion for results will make her a wonderful addition to the Board of Directors.”

For more information on the Cure JM Board of directors please click here.

Upcoming Events

3rd Swing For a Cure Golf Event
Thursday, April 23
Covington, LA

Neon Run Temecula
Saturday, April 25
Temecula, CA

Dinner, Auction and 90's Neon Party benefiting Cure JM
Friday, May 29 6pm
Hillsboro, OR

Chuck E. Cheese party benefiting Cure JM
Friday, May 29
Mentor, OH

Dmitri's Mission to Find a Cure
Saturday, June 6
Mineville, NY

2nd Annual Cowboy Brad Concert
Saturday, June 27
Estes Park, CO

11th Annual Strawberry Festival
Sunday, June 28
Crown Point, NY

3rd Annual Texas Family "Mini-Conference"
Saturday, July 18
Martindale, TX

Annual Ride for a Cure in memory of Mason Smedley
Saturday, August 8
Portland, OR

Ride for a Cure for Ava and Jordyn
Saturday, August 8
Buckley, WA