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Meet the World’s Best Juvenile Myositis Researchers
The upcoming National Family Conference is the ideal opportunity to meet the biggest names in JM research in a face-to-face, interactive setting.
Here are some of the world's best that you'll have the chance to meet and learn from:
- Brian Feldman, MD, MSc, FRCPC Professor of Pediatrics & Medicine, Faculty of Medicine, and the DLSPH University of Toronto Head, Division of Rheumatology SickKids, University of Toronto Head, Division of Rheumatology SickKids
- Charlly Kao, PhD Senior Scientist, Center for Applied Genomics, The Children's Hospital of Philadelphia .
- Susan Kim, MD, MMSc Associate Professor, Associate Clinical Professor of Pediatrics, University of California, San Francisco Department of Pediatrics
- Ann Reed, MD Duke University School of Medicine Chair of the Department of Pediatrics
- Lisa G. Rider, MD Deputy Chief of the Environmental Autoimmunity Group, National Institute of Environmental Health Sciences, National Institutes of Health, and Chairman, Cure JM Medical Advisory Board, National Institute of Environmental Health Sciences, National Institutes of Health
- Lauren Pachman, MD Professor of Pediatrics, Northwestern University Feinberg School of Medicine .
Explore the entire agenda here.
Mental Health Matters
“There was a time in America, not all that long ago, when mental health issues in families were swept under the rug, shrugged off with a comment that “he’ll grow out of it,” or “she’s just being a typical teenager.”
While we would like to think those days of ignorance are largely behind us, the alarming increase in the rate of adolescent and teen suicide should serve to remind us that mental health issues can strike almost any child, at any time -- even those children who excel in school, have many friends, and seemingly have it all together.
I’d like to feature two Cure JM board members—Shari Hume and Suzanne Edison, whose leadership in mental health in the juvenile myositis community is casting a bright light on the need to assure that JM parents and patients have the knowledge and support helpful in managing mental health issues that may arise as complications of juvenile myositis.
“Our kids fight JM with incredible courage and resilience in the face of adversity,” says Hume, a co-founder of Cure JM. “Yet, over time, the challenges of living with a chronic and rare disease can take their toll on the patient’s and family’s emotional health. We encourage not only the patients to seek counseling and support, but also caregivers and siblings.”
In focus groups conducted by Cure JM last year, parents reported that the most common mental health issues JM children face are anxiety and depression often caused by their child “being different” or “looking different,” as a result of the course of the disease. JM kids themselves report high levels of anxiety, likely a mix of emotional stress and pharmacologic response to drug therapies such as prednisone/methotrexate or IVIG infusions.
“All these drugs I have to take just make me feel crazy weird, like I can’t control my brain” noted one 14-year-old boy speaking at a recent Cure JM Chapter gathering. “All my life I’ve been so different that I wonder if I’ll ever know what normal is.”
Cure JM is working to develop several programmatic initiatives that focus on patient education, clinician education, and incorporating mental health into standards of care for JM and other rare pediatric rheumatic diseases.
“There is much to be done” says Edison, who along with Hume and other Cure JM board members is leading the effort to increase awareness among clinicians that will lead to standardized screening in JM care. “Cure JM has a phenomenal group of committed clinicians across the country who are aware of the tremendous need and focused on developing age-appropriate interventions at the institutional level. The key to building successful programs is to educate more clinicians on the need for screening and possible intervention, and parents can play an important role as advocates."
In Cure JM’s focus groups, parents report that the most desired interventions for their children are counseling and peer support groups.
What parents can do:
- Familiarize yourself with mental health issues. Click on this link for “Mental Health Resources for JM Families”. You’ll find a section on How to Get Help.
- Connect with Cure JM leadership on how you can become a mental health advocate with your child’s heath care provider. Contact Contact Shannon Malloy at
and we’ll connect you with other parent or board leaders in your area working as advocates in mental health.
- Reach out to your provider to ask what mental health resources they may have available. Many children’s hospitals have psychologists, counselors, and other mental health professionals on staff, but they may not be directly connected to your child’s primary clinician. Consult with your clinician for a referral and seek them out. Check with your insurance company on coverage. Most provide some level of reimbursement.”
- Jim Minow, Cure JM Executive Director
JOIN US AT A WALK NEAR YOU
Come together to support children, teens, and young adults fighting Juvenile Myositis.
Find a Walk Strong® event near you:
- Chicago, IL - Sunday, June 23
- Seattle, WA / Pacific Northwest - Saturday, September 21
- Washington, D.C. - Saturday, September 21
- New York - Sunday, October 6
- Massachusetts - Saturday, October 12
Contact us at for more information or to get involved.
UPCOMING EVENTS
Learn more or RSVP here.
- Cure JM Foundation 13th National Family Conference and Fundraiser
June 21st - 23rd, Oak Brook, IL
- 6th Annual Cowboy Brad Concert for Cure JM
July 13th, YMCA of the Rockies, Estes Park, CO
- Evening Under the Stars
Saturday, August 3, Winona Lake, IN
- Swing fore a Cure Columbus
August 17th, Golf Club of Dublin, OH
- Christmas Shop for Cure JM
November 2, Warsaw, IN
Contact for more information and to get involved.
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