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SECURE YOUR SPOT
‘Staying in touch and texting new friends from the conference can help get you through rough times,” says one teen who attended last year.
“School friends can’t always understand, but my Cure JM friends get me.”
Our annual conference is life-changing for so many people.
We want you to have those same, meaningful connections. You’re invited to our June conference in Chicago, June 21-23. Click the button for the full agenda and to register.
DANCE FOR A CAUSE
John (right), and the Mayor of Frisco, TX, Jeff Cheney. |
John Kara is a father to a JM warrior, is a pilot with Southwest Airlines, and the President of our Dallas-Ft. Worth Chapter.
He partnered with the Texas Legends of the NBA G Leage on the first annual Cure JM Dance For the Cure.
Here are the details:
- The Dance is February 9 at the Dr Pepper Arena in Frisco, Texas from 1:00PM-3:00PM.
- There will be food, drinks, prizes, and tons of fun. Tickets include admission to the dance and to the Legends game afterwards.
- 100% of ticket sales go to Cure JM.
YOUR DONATIONS AT WORK
A crucial part of our mission is to fund the most promising JM research. We want you to get to know the work, and the people, we're funding.
Meet Ann Reed, M.D., Cory Stingl, M.D., Samuel L. Katz, M.D., and read about their Cure JM-funded work, Precision Decision in the Treatment of Juvenile Dermatomyositis.
Would you tell us a little bit about your background, qualifications and broad interest in JDM?
Cory: I am a pediatric rheumatology fellow and post-doctoral fellow in genomics in my final year of training at Duke University. JDM captured my interest early in my rheumatology training because our understanding of the disease and available treatment options lags behind other diseases we treat and the burden of side effects from treatment remains relatively higher. These factors create a great need for patients, families, and pediatric rheumatologists to find better ways to treat JDM so we can improve patient care and outcomes.
Ann: I am a pediatric immunologist/rheumatologist whose career has focused on understanding of why children/teens get JDM and how do we improve our knowledge of how to treat the children/teens.My clinical focus has been to evaluate and treat JDM along with leading clinical trials to bring new therapeutics into the our repertoire of treatment.
Tell us about your research institute, and what is it currently doing for JDM patient care and JDM research programs?
Duke University is the newest Cure JM center of excellence, which is headed by Dr. Ann Reed. In our clinic, we see children with a broad range of muscle-related complaints. We use a team approach of experts in pediatric rheumatology and neurology, physical therapy, dedicated nursing staff, and, when necessary, metabolomics, genetics, and dermatology to reach a diagnosis and develop a treatment plan. We also provide second opinions and work cooperatively with local rheumatologists to offer our expertise when needed while decreasing the burden that traveling long distances can place on a family caring for a sick child. Our goal is always to get children back to being healthy and active while minimizing the use of medications like steroids that often have side effects with prolonged use. Our research efforts focus on identifying molecular and genetic profiles of JDM so we can better understand the disease and find new, more effective treatments for the disease. Our research programs are diverse, but involve tools like metabolomic, proteomic, and gene expression. These tools give insights into the underlying changes in the body due to JDM but may also help identify clues regarding how a child will respond to available treatments. We hope this information will lead to better outcomes by matching children with JDM with the most effective therapy available.
What will this grant enable you to study in JDM?
This grant is enabling us to study genes that are active in JDM, and whether they predict treatment response to Rituximab, a medication used to treat more severe JDM.
Why is this study so important?
Our study is important because we believe it will help identify patients who will have a strong or weak response to Rituximab and help physicians better understand who will benefit the most from this treatment option.
How do think this study will impact JDM scientific knowledge and JDM patient care?
We believe this study will enable pediatric rheumatologists to better understand which children will benefit from rituximab therapy, and therefore lead to more personalized approaches to treatment. Understanding which patients will benefit the most from rituximab may help improve outcomes by getting children with JDM who will benefit from this medication on effective treatment sooner. This knowledge may also help avoid potential medication side effects by not giving rituximab to children who will not have a good response.
Can you share your vision for the potential outcomes in JDM in this area in the next five years?
Over the next five years, I expect to see improved outcomes in JDM for multiple reasons. First, I believe we will find additional medications used in other autoimmune diseases that can be repurposed for use in JDM. Second, we as physicians will have better access to tools that will help us better match children to the most effective treatment available for their form of JDM. Third, I think that as more data is available for the first two mechanisms we will see improvement in outcomes because children with JDM will be treated with lower doses of steroids and have fewer side effects from that treatment. Lastly, I believe access to pediatric rheumatologists will continue to improve in the next five years and as that access improves I think children with JDM will be recognized earlier and receive better care, which will improve outcomes.
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:
- Houston, TX- Saturday, February 9
- Austin-San Antonio, TX- Saturday, February 9
- Southern California - Saturday, February 23
- Central Florida - Saturday, March 2
- Dallas-Fort Worth. TX- Sunday, March 3
- Pittsburgh, PA – Saturday, April 13
- Columbus, OH - Saturday April 27
- Northern California - Saturday, May 4
- Philadelphia, PA - Saturday, May 4
- Minneapolis, MN - Saturday, June 1
- Chicago, IL - Sunday, June 23
- Washington, D.C. - Fall, 2019
- Massachusetts - Fall, 2019
- Seattle, WA / Pacific Northwest - Fall, 2019
- New York - Fall, 2019
Contact us at for more information or to get involved.
UPCOMING EVENTS
Learn more or RSVP here.
- Dance Strong to Cure JM - DFW Chapter
Saturday, February 9, Dallas, TX
- Northern California Chapter Social and Educational Event
Saturday, February 23rd, San Jose, CA
- LivLifeStrong 5k Run/Walk for Cure JM
March 23rd, Camarillo CA
- Cure JM Foundation 13th National Family Conference and Fundraiser
June 21st - 23rd, Oak Brook, IL
- 6th Annual Cowboy Brad Concert for Cure JM
Saturday, July 13, Estes Park, CO
Contact for more information and to get involved.
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