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Cure JM Foundation Newsletter

Cure JM Newsletter Masthead

August, 2017

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Cure JM Grants

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Trinity Burchett: Back On The Court

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Myositis and You

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Patients Needed for Research Studies

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Walk Strong™ Events Near You

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Upcoming Events

CURE JM GRANTS

Dr, Deakin, Dr. Norman and Dr. Nicolai

From left: Dr, Deakin, Dr. Norman and Dr. Nicolai

Cure JM is pleased to announce funding for three new grants to advance Cure JM’s genetic discovery program. These grants are to:

  • Claire Deakin, M.D., to assess genetic risk factors in JDM from a large group of DNA samples
  • Paul Norman, Ph.D., who is investigating the entire HLA genomic region implicated in JM
  • Rebecca Nicolai, M.D., who will measure interferon gene expression in JDM muscle.

Each of these research projects share a common goal of advancing genetic discovery. Cure JM’s genetic discovery program aims to advance Juvenile Myositis research with the ultimate goal to find a cure and better treatments for Juvenile Myositis.

Along with these genetic studies, Cure JM funded three additional studies in this recent grant cycle, which brings the total number of studies we are currently funding to 25. View more information here. Since 2003, Cure JM has invested $12 million and supported over 140 research studies to accelerate the pace of research.

Additional Cure JM research grants will be awarded in October and announced in a future Cure JM eNews.


TRINITY BURCHETT:
BACK ON THE COURT

Trinity with Volleyball Medal

Less than a year after diagnosis Trinity is back doing what she loves -- playing volleyball. Trinity had been playing volleyball for 2 years when, last fall, she was diagnosed with Juvenile Dermatomyositis, the most common form of Juvenile Myositis.

Before her diagnosis, Trinity told us that the volleyball seemed too heavy to toss in the air to serve. She had to scoot up to the 10 foot line on the court to serve and use two hands to toss the ball in the air. At that time, no one knew what was going on. Trinity was then diagnosed with JDM and quickly started treatments at Children's Hospital of Colorado in Denver.

“She has improved so much since being diagnosed last fall and starting her medications,” says her mom Kerri. “Both her strength and confidence have returned.”

Recently, Trinity’s team, the Spikers, won the Legacy Volleyball tournament in Fort Collins. She served from the back, regulation line and still pounded the ball over the other team’s heads.

“We are proud of her not because her team won, but because she is winning. Her smile says it all!” says Kerri.


REMEMBER: MYOSITIS & YOU BOOK AVAILABLE

Myositis and You Book and eBook

The book Myositis and You is available from Amazon in both hard copy and an eBook. Funded in part by Cure JM, the comprehensive guide features over 450 pages with contributions from over 80 experts and medical professionals. Learn more and purchase a hard copy or eBook at: curejm.org/book


PATIENTS NEEDED:
PARTICIPATE IN RESEARCH

Girl getting treatment.

Help advance the search for better treatments and a cure for JM by participating in a Juvenile Myositis research study.

Volunteer or Learn More

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UPCOMING WALK STRONG TO CURE JM™ EVENTS

Walkers in Tutus

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.

  • 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
  • WORCESTER, MA - Sunday, October 15, 2017;
    The Arboretum at Green Hill Park, Worchester, MA
    Contact melissa.corey@curejm.org
    or CLICK HERE TO SIGN UP
  • 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- 2018
    More information coming soon.
  • CHICAGO - Spring, 2018
    More information coming soon.
  • NEW YORK - September, 2018
    More information coming soon.
  • Washington, D.C. - July 1, 2018
    More information coming soon.

UPCOMING EVENTS

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

  • Evening Under The Stars - Saturday, August 5, Warsaw, IN
    Contact kristine.alderfer@curejm.org
  • Flea Market to benefit Cure JM - Saturday, August 19, Chicago, IL. Contact Sharon Ortega at sortegasort@yahoo.com
  • Cure JM Yard Sale - Friday - Sunday, September 8-10, Lake Stevens, WA
    Contact julie.shevlin@curejm.org
  • Dinner and Auction to Benefit Cure JM - Saturday, September 9, Portland, OR. Contact darlene.fritsch@curejm.org
  • A Rare Affair: Dinner, Dancing & Silent Auction - Saturday, September 23, Pine Plains, NY. Contact shannon.malloy@curejm.org or visit www.coltonsxycause.com/a-rare-affair
  • Louisiana Chapter Meet & Greet - Sunday, October 8, Prairieville, LA Contact sheila.harvey@curejm.org
  • Minnesota Educational Event - Sunday October 29, Minneapolis, MN. Contact danielle.harris@curejm.org
  • Christmas Shop for Cure JM - Saturday, November 4, Warsaw, IN
    Contact kristine.alderfer@curejm.org or visit our Facebook page
  • Giving Tuesday and the Holiday Challenge!– Tuesday, November 29. This is a “virtual” online event. Contact shannon.malloy@curejm.org

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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