-

CHILDREN’S HOSPITAL OF PHILADELPHIA EXPANDS RESEARCH OPPORTUNITIES FOR JM FAMILIES

Researchers and phlebotomists from the Center for Applied Genomics (CAG) at Children’s Hospital of Philadelphia (CHoP) will travel to two upcoming Cure JM events to collect biospecimen samples from Cure JM families. Families will contribute samples to support a study that hopes to identify the genes that play a part in Juvenile Dermatomyositis (JM).

Cure JM invested in this genetic discovery program, which is led by Hakon Hakonarson, PhD, MD, and Charlly Kao, PhD. The goal of the study is to discover specific genes that associate with JM, and to develop an understanding of why mutations in those genes can contribute to development of JM and autoimmunity. Ultimately, this understanding can lead to drugs that aim to rebalance or correct the results of genes that are dysregulated or mutated.

“When conducting rare disease research, being able to collect samples from so many families is a unique opportunity,” says Dr. Kao. “We at the CAG are excited at the prospects of being able to utilize this valuable resource in helping to drive research into finding the genetic factors for JM to better understand the underlying causes of the diseases, which would then aid in the development of new diagnostic tools and treatments.”

If you’re attending the upcoming Annual New York Walk Strong to Cure JM® Family Fun Event and Fundraising Walk (10/14), or the 3rd Annual Chicago Cure JM Chapter Family Educational Event (10/27), consider signing up to participate in the study. Information about each event and how to register for the study is here.

CELEBRATING THE SERVICE OF AMY GLEASON, PATTI LAWLER, RHONDA MCKEEVER AND JULIE SHEVLIN

We want to extend our deep thanks to Amy Gleason, Patti Lawler, Rhonda McKeever and Julie Shevlin for their collective service to the Cure JM Board of Directors. As they transition off the board, we thank them for their strategic leadership and oversight. Their contributions helped drive Cure JM’s progress.

GIVING TUESDAY - NOVEMBER 27TH

Save the date for the biggest day of the year! Cure JM is competing in the annual CrowdRise Holiday Challenge.

In the Holiday Challenge, charities like Cure JM compete to raise the most funds. The charity that raises the most money on Giving Tuesday, November 27th, will win funds for its cause.

Cure JM won a top prize the last five years in a row, and we need your help to do it again. For a small rare disease organization like Cure JM, winning this prize is crucial to helping move Cure JM’s Strategic Research Plan forward.

More information is coming soon. To learn more, please contact Shannon Malloy at shannon.malloy@curejm.org

JOIN US AT A WALK NEAR YOU

Come together to support children, teens, and young adults fighting Juvenile Myositis.

REGISTER HERE

Find a Walk Strong® event near you:

• Seattle, WA - Saturday, October 6, 2018
• Scarsdale, NY - Sunday, October 14, 2018
• Houston - Saturday, February 9, 2019
• Austin-San Antonio - Saturday, February 9, 2019
• Southern California - Saturday, February 23, 2019
• Central Florida - Saturday, March 2, 2019
• Northern Florida - Saturday, March 2, 2019
• Dallas-Fort Worth - Mach, 2019
• Pittsburgh, PA – Saturday, April 13, 2019
• Northern California - Saturday, May 4, 2019
• Philadelphia, PA - Saturday, May 4, 2019
• Columbus, Ohio - May, 2019
• Washington, D.C. - May, 2019
• Minneapolis, Minnesota - Saturday, June 1, 2019
• Chicago, IL - Sunday, June 23, 2019

Contact us at info@curejm.org for more information or to get involved.

UPCOMING EVENTS

Learn more or RSVP here.

• Crossfit for a Cure!
  Saturday, October 13th, Cheektowaga, NY
• 3rd Annual Chicago Cure JM Chapter Family Educational Event
  Saturday, October 27th, Hoffman Estates, IL
• 2nd Annual Cure JM Minnesota Chapter Family Educational Event
  Sunday, October 28th, Minneapolis, MN
• Christmas Shop for Cure JM
  Saturday, November 3rd, Warsaw, IN
• 2nd Annual Ohio/Western Pennsylvania Chapter Family Day!
  Sunday, November 4th, Columbus, OH
• Philly Chapter Family Education and Fun Day
  Saturday, November 17th, Philadelphia, PA
• Giving Tuesday! This is the biggest day of the year at Cure JM!
  Mark your calendars for Tuesday, November 27
• Northern California Chapter Social and Educational Event
  Saturday, February 23rd, 2019, San Jose, CA
• Cure JM Foundation 13th National Family Conference and Fundraiser
  June 21st - 23rd, 2019, Oak Brook, IL
• 6th Annual Cowboy Brad Concert for Cure JM
  Saturday, July 13, 2019, Estes Park, CO

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