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“CONSENSUS” TREATMENT PLAN FOR SKIN PREDOMINANT JDM DEVELOPED THROUGH CARRA

Treating skin disease as a component of JDM is important as it reflects disease activity and may contribute to morbidity, including physical disfigurement, calcinosis and lipodystrophy. Skin disease is a manifestation of active vasculopathy in JDM that is important to monitor and treat. Persistently active skin disease at three and six months after diagnosis is predictive of continued active disease.

Dr. Susan Kim, associate professor of pediatrics UC San Francisco and member of the Cure JM Medical Advisory Board, led a group of pediatric rheumatologists in completing a multi-year study to address the subset of children who have the rash of JDM without significant muscle weakness -- skin predominant JDM. Optimal treatments for these children are unknown.

The work of Kim’s group led to the development of Consensus Treatment Plans, or CTPs, to provide guidance and standardize approaches to treating skin predominant JDM. Three treatment options were proposed:

• Hydroxychloroquine alone
• Hydroxychloroquine and methotrexate
• Hydroxychloroquine, methotrexate and corticosteroids

The study was published last year in Pediatric Rheumatology Online and conducted through the Children’s Arthritis and Rheumatology Research Alliance (CARRA) consortium of pediatric rheumatology health care providers. Dr. Kim is Vice-Chair of CARRA’s JDM Research Committee.

It is hoped that these CTPs can be applied prospectively, through the CARRA Registry, to determine the best treatment approaches and improve outcomes for skin predominant JDM. Dr. Kim points out that these CTPs represent typical, reasonable treatment approaches used by pediatric rheumatologists. They are not standards of care, and do not replace clinical judgment or decision making between the treating physician and patient. Of note, not all available treatment options were included in the study, including, high dose oral or intravenous corticosteroids and intravenous gamma globulin.

Co-authors include Philip Kahn, Angela Robinson, Bianca Lang, Andrew Shulman, Edward Oberle, Kenneth Schikler, Megan Curran, Lilliana Barillas-Arias, Charles Spencer, Lisa Rider and Adam M. Huber.

CLICK HERE TO READ THE FULL ARTICLE

ANNUAL NATIONAL FAMILY CONFERENCE: REGISTER NOW TO SAVE

If you’re thinking about attending the National Family Conference, now is the time to register. There are only a few days left to register at the best rates. Early Bird registration closes June 3rd.

Currently, the rate is $100, but it goes up to $125 on June 4th.

REGISTER NOW

The Cure JM National Family Conference is June 29 - July 1 at the Key Bridge Marriott in Arlington, Virginia, just outside of Washington, D.C.

The conference brings families of JM patients together with prominent physicians and researchers for a spirited weekend of sharing and connecting.

You’ll not only learn directly from the experts about the latest in Juvenile Myositis research and treatments, but you'll connect with families just like yours. 

We hope to see you in June.

Here are the links you’ll need:

• Register for the Conference here.
• Reserve rooms at the Key Bridge Marriott here. Rooms in the Cure JM Block are $119 per night.
• Register for the 2nd Annual Walk Strong to Cure JM D.C. here.

VIEW THE COMPLETE CONFERENCE SCHEDULE

CONFERENCE SPOTLIGHT

This month we are spotlighting the “Nutrition & Exercise Panel” with Julie Shevlin, RD and Josh Woolstenhulme, PhD, DPT

Sat, June 30 - 1:30 PM - 3:00 PM and 3:30pm - 5:00 PM
What are the best foods for my child with JM? How do we handle the steroid cravings? How do we eat healthy with all the side effects of the medications? What about a gluten-free diet? Anti-inflammatory diet? Are competitive sports safe for my child? Are there exercises my child can do to improve their outcome? In this interactive session, we will talk about how to apply the nutrition recommendations sometimes provided by hospitals/dieticians and make them work for your family in the “real world.” Learn what has worked for other JM families.

CYCLOPHOSPHAMIDE: AN EFFECTIVE SECOND-LINE TREATMENT

A recent study of patients treated with Cyclophosphamide showed a reduction in skin disease, muscle disease and global disease 6, 12 and 24 months after starting the drug. The study, published earlier this year in Arthritis and Rheumatology, compared long-term skin disease, muscle disease and global disease activities in 56 patients treated with the drug compared to 144 patients not treated with the drug. Treated patients reported no side effects.

Patients who were treated with Cyclophosphamide showed significant improvement in skin disease in particular, according to the study's co-author Dr. Claire Deakin.

In patients with severe Juvenile Dermatomyositis, second-line treatments may be required. Cyclophosphamide is used to treat some connective tissue diseases, but evidence of its efficacy in JDM is limited.

In contrast to biologic therapies that are also used as second-line treatments in JDM, Cyclophosphamide is an inexpensive drug requiring a short treatment course of 6–7 months. As long as infections are monitored, the sustained clinical benefit demonstrated by this study suggests that more frequent use of Cyclophosphamide may be warranted.

CLICK HERE TO READ THE ENTIRE STUDY

Principal Investigators within the research study group were Dr. Claire Deakin and Dr. Raquel Campanilo-Marques, both of University College London Great Ormond Street Institute of Child Heath. Other authors included Dr. Lucy Wedderburn and Dr. Clarissa Pilkington.

UPCOMING WALK STRONG TO CURE JM™ EVENTS

Cure JM is excited to announce more Walk Strong to Cure JM™ family fundraising walks. Come out and join us at a walk near you! Each walk will feature fun, entertainment, food, and a family-friendly fundraising walk. Forward this invitation to your friends & family in the area of the walk or event.

• 2nd Annual Washington, D.C. Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk Sunday, July 1, Arlington, VA 22209
  CLICK HERE TO REGISTER OR LEARN MORE
  Contact lauren.alvord@curejm.org
• 2nd Annual Massachusetts Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk Sunday, September 30
  CLICK HERE TO REGISTER OR LEARN MORE
  Contact melissa.corey@curejm.org
• 3rd Annual Seattle Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk Saturday, October 6, Redmond, WA
  CLICK HERE TO REGISTER OR LEARN MORE
  Contact shannon.malloy@curejm.org
• 2nd Annual New York Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk Sunday, October 14,
  CLICK HERE TO REGISTER OR LEARN MORE
  Contact tracy.vanness@curejm.org
• Inaugural Houston Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk Saturday, February 9, 2019
  CLICK HERE TO REGISTER OR LEARN MORE
  Contact melissa.shelby@curejm.org
• 2nd Annual Austin-San Antonio Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk Saturday, February 9, 2019
  CLICK HERE TO REGISTER OR LEARN MORE
  Contact lauren.alvord@curejm.org
• 2nd Annual Philadelphia Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk Saturday, May 4, 2019
  CLICK HERE TO REGISTER OR LEARN MORE
  Contact lauren.alvord@curejm.org
• 3rd Annual Chicago Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk Sunday, May 5, 2019
  CLICK HERE TO REGISTER OR LEARN MORE
  Contact denise.koch@curejm.org

UPCOMING EVENTS

Join fellow Cure JM families and supporters at an upcoming event near you.

• Cure JM Foundation 12^th Annual National Family Conference
  June 29 - July 1, Key Bridge Marriott, 1401 Lee Highway, Arlington, VA 22209 (Washington, D.C. Metro Area)
  CLICK HERE TO VISIT THE CONFERENCE WEBSITE
  For questions contact conference@curejm.org
• Inaugural Cure JM Family Educational Event Presented by the Houston Chapter of Cure JM
  Saturday, July 7, The Pavilion for Women, 6651 Main St, Houston, TX 77030
  Contact: bud.sheffield@curejm.org
• 5^th Annual Cowboy Brad Concert for Cure JM
  Saturday, July 21, YMCA of the Rockies-Hyde Chapel, 2515 Tunnel Rd., Estes Park, CO 66049
  Contact laurel.krider@curejm.org
• Evening Under the Stars
  Saturday, August 4, Warsaw, IN 46582
  Contact: kristine.alderfer@curejm.org
• 3rd Annual Cure JM Family Educational Event Presented by the Chicago Chapter of Cure JM
  Saturday, October 27, Ambria College of Nursing, 5210 Trillium Blvd. Hoffman Estates, IL 60192
  Contact: jennifer.coe@curejm.org or denise.koch@curejm.org
• 2nd Annual Cure JM Family Educational Event Presented by the Minnesota Chapter of Cure JM
  Sunday, October 28, University of Minnesota Masonic Children's Hospital, South Building, Wilf Family Center 2nd Lobby Floor, Rms 1 & 2, 2450 Riverside Avenue, Minneapolis, MN 55454
  Contact: danielle.harris@curejm.org
• Christmas Shop for Cure JM
  Saturday, November 3, Warsaw, IN 46582
  Contact: kristine.alderfer@curejm.org

Do you have a story you would like to share? Contact enews@curejm.org.