Cure JM Foundation Newsletter

2nd GLOBAL CONFERENCE ON MYOSITIS

On May 5-8, 2017 over 300 Myositis experts, physicians, and researchers from around the world came together at the William F. Bolger Center in Potomac, MD for the 2nd Global Conference on Myositis (GCOM), sponsored in part by Cure JM Foundation.

The goal of this four-day conference was to bring together leading experts on Myositis from around the world to advance the field of Myositis research through international collaboration in research and clinical trials.

On Friday, May 5, Cure JM hosted a Pre-Conference Workshop on Juvenile Myositis, with moderators Susan Kim, MD, MMSc, of the United States and Annett van Royen-Kerkhof, MD, PhD, of the Netherlands.

On Saturday, May 6, Cure JM sponsored a Breakout Session, "Visions for the Current State and Future Priorities for Research in Juvenile Myositis," chaired by Lisa Rider, MD, Adam Huber, MD, MSc, and Cure JM Executive Director James Minow. At this session, Cure JM President Mitali Dave presented the top research priorities of Cure JM families to the 75 researchers in attendance.

"Presenting the research priorities as outlined by Cure JM families was very impactful," says Annie Mitchell, Cure JM Board of Directors and member of the GCOM Steering Committee. "The researchers and experts in the room heard exactly what research priorities matter most to our Cure JM families."

A full summary of the outcomes of GCOM and the Cure JM research priority survey are coming in a future update.

SUPER SIBLING - SCIENCE FAIR WINNER

Camden C. recently won 3rd place in the regional science fair. He was studying the effects of blocking UV rays with sunscreen.

His goal was to determine which sunscreen was best for his brother, who is fighting JDM. Camden wanted to find the best sunblock for his brother to wear and the winner of his study was Blue Lizard.

"This sweet boy is always being supportive of his brother with JM," says Camden's mom Ragan. "It makes my heart melt."

SUMMER SUN PROTECTION

As summer approaches, it is important to keep sun protection in mind for JDM patients. Here are some tips and tricks for sun exposure, from Myositis and You, Chapter 16:

Sunblock and sunscreen tips:

• Use sunblock or sunscreen every day
• A SPF of 30 or more is recommended
• As a rule, sunblocks consistently provide the best coverage
• Sun blocks, such as those containing titanium dioxide or zinc oxide, physically block the sun's rays from reaching the skin
• Sunblock should project from both UVA and UVB rays (known as "broad spectrum")
• We recommend checking with your family's myositis doctor or dermatologist to see if the sun protection products you have selected are adequate

Other Tips:

• Avoid areas where your child will be exposed to the sun
• Use sun clothes or hats to cover your child's skin from exposure, many retailers have these items on sale this time of year
• Dermatologists also recommend trying to avoid sun exposure between 10AM and 4PM, or at a minimum from 11AM-1PM
• Some parents have also found it useful to check the UV forecasts online here or by downloading UV Forecast apps to their phone

View the session on Sun Protection from the Cure JM National Educational Conference.

Additional sun tips and tricks from parents from the Cure JM website.

COULDN'T ATTEND THE 2017 NATIONAL CONFERENCE IN AUSTIN?

If you were unable to attend the last National Conference and would still like to see what the conference offered to the attendees, please click here to view session videos and read session recaps.

ONE MOM MAKING A DIFFERENCE: JEN COE

Jen Coe is one mom who is making a difference for her daughter Kennedy. After Kennedy was diagnosed with Juvenile Dermatomyositis, the most common form of JM, Jen and her family became involved with Cure JM. For many years, Jen has raised funds through events like the "Jam for JM", a talent show at the local high school with the proceeds benefiting Cure JM.

In 2016, Jen stepped forward to lead the Chicago Chapter's Inaugural Walk Strong to Cure JM. The walk was recently held on May 7th in Elk Grove Village, Illinois. The Walk Strong to Cure JM Chicago had over 1,300 walkers – including 40 Cure JM families -- and raised over $95,000 for JM research.

"All of the families of the Chicago Chapter banded together to make this walk possible," said Jen. "I am truly blown away the overwhelming support of our families and community. It was an incredible day!"

Thank you to all of the Chicago families that attended, raised funds, and rallied the support of the Chicago community. And a special thank you to the Chicago Walk Committee:  Jen Coe, Kathy Evans, Sharon Ortega, Kathy Yates, Jen Shimp, Marissa Mikos, and Michael Coe.

JOIN US AND
WALK STRONG TO CURE JM™

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 a walk. To learn more or register for a walk contact your local walk leader or lauren.alvord@curejm.org.

• WASHINGTON, D.C. - Sunday, June 4, 2017
  RIO Washington Center, Gaithersburg, MD. Contact simonetta.donofrio@curejm.org or CLICK HERE TO SIGN UP
• SEATTLE, WA - Saturday, October 7, 2017
  Marymoor Park, Redmond, WA
  Contact julie.shevlin@curejm.org or CLICK HERE TO SIGN UP
• ORLANDO, FL - Saturday, October 7, 2017
  Bill Frederick Park at Turkey Lake, Orlando, FL
  Contact denise.rackauskas@curejm.org or CLICK HERE TO SIGN UP
• BOSTON, MASSACHUSETTS - Fall, 2017
  Contact melissa.corey@curejm.org
• DALLAS/FORT WORTH, TX - Saturday, November 11, 2017
  River Legacy Park, Arlington, TX
  Contact jennifer.howard@curejm.org or CLICK HERE TO SIGN UP
• HOUSTON, TX - Saturday, January 13, 2018
  Rob Fleming Park, The Woodlands, TX
  Contact melissa.shelby@curejm.org or CLICK HERE TO SIGN UP
• CENTRAL TEXAS - Spring, 2018
  Contact april.duley@curejm.org

UPCOMING EVENTS

Join fellow Cure JM families and supporters at an upcoming event near you. View the complete list of events here.

• Cowboy Brad Concert for Cure JM - Saturday, June 24, Estes Park, CO
  Contact laurel.krider@curejm.org
• Crossfit for Cure JM - Saturday, July 15, Williamsville, NY
  Contact colleengrant1@hotmail.com.
• Philadelphia Family Social Event - Saturday, July 15, Wayne, PA
  Contact kate.ettingoff@curejm.org.
• Evening Under The Stars - Saturday, August 5, Warsaw, IN
  Contact kristine.alderfer@curejm.org
• Annual Cure JM Yard Sale - Friday - Sunday, September 8-10, Lake Stevens, WA
  Contact julie.shevlin@curejm.org

DR. LUCY WEDDERBURN APPOINTED TO THE CURE JM MEDICAL ADVISORY BOARD

Cure JM is honored to announce that Lucy Wedderburn, MD, PhD, FRCP, has accepted an appointment to the Cure JM Medical Advisory Board.

Cure JM Foundation's Medical Advisory Board (MAB) is comprised of internationally renowned researchers and clinicians in the field of Juvenile Myositis. The MAB provides insight, scientific direction, and expertise to Cure JM's Board of Directors and Staff. The MAB also consults with clinicians who request guidance in the treatment of a patient.

Dr. Wedderburn is a Professor in Pediatric Rheumatology at University College London (UCL) Institute of Child Health Great Ormand Street, and a Consultant at Great Ormond Street Hospital (GOSH) and Director, Arthritis Research UK Center for Adolescent Rheumatology at University College London.

Professor Wedderburn's areas of interest include childhood arthritis and childhood myositis.   She runs a research team that investigates the mechanisms and different types of these diseases, as well as what controls response to treatment. She is the Chief Investigator of a large cohort study in JDM that includes centers from across the UK.

"We are excited about the addition of Dr. Wedderburn to the Cure JM Medical Advisory Board," says Mitali Dave, Cure JM President and Co-Chair of Cure JM's Research Committee. "Dr. Wedderburn's expertise in childhood rheumatic diseases and research will be an important part of helping Cure JM advance Juvenile Myositis research."

The Cure JM Medical Advisory Board members are:

• Lisa G. Rider, M.D., Chairman, Cure JM Foundation Medical Advisory Board, Deputy Chief of the Environmental Autoimmunity Group, National Institute of Environmental Health Sciences, National Institutes of Health
• Lauren M. Pachman, M.D., Professor of Pediatrics, Northwestern University Feinberg School of Medicine
• Ann M. Reed, M.D., Chair of the Department of Pediatrics, Duke University School of Medicine
• Adam Huber, M.D., Pediatric Rheumatologist and Professor of Pediatrics at the IWK Health Centre and Dalhousie University in Halifax, Nova Scotia, Canada
• Susan Kim, M.D., MMSc, Pediatric Rheumatologist and Associate Clinical Professor of Pediatrics, University of California, San Francisco        
• Lucy Wedderburn, MD, PhD, FRCP, Professor in Pediatric Rheumatology at University College London (UCL) Institute of Child Health, and a Consultant at Great Ormond Street Hospital (GOSH).
• Kanneboyina Nagaraju, DVM, MVSc, PhD, Founding Chair and Professor, Pharmaceutical Sciences, Binghamton University, State University of New York.  

Do you have a story or photo you would like to share in a future edition of the ENews? Please send to darlene.fritsch@curejm.org

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