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Cure JM Foundation Newsletter

Cure JM Newsletter Masthead

November, 2017

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Cure JM Announces Funding for Three New Research Grants

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Cure JM Funds New Center Of Excellence At Seattle Children's Hospital

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Get Ready for Giving Tuesday

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Pennies for Pumpkins

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Upcoming Events

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CURE JM ANNOUNCES FUNDING FOR THREE NEW RESEARCH GRANTS

Researcher with Test Tube

Cure JM has recently funded three new grants in the U.S. and abroad.

"Your vital support provides better lives for children fighting Juvenile Myositis and gives families hope for the future," says Cure JM Executive Director Jim Minow. "None of this would be possible without you."

New grants have been awarded to:

  • Laura Tasan at the University of Pittsburgh to study the feasibility of Ultrasound as a diagnostic tool for muscle disease in children. If successful, Ultrasound could supplement or replace the use of costlier MRIs to monitor disease activity in JM.
    Award Amount: $40,000
  • Josh Woolstenhulme at George Washington University to better understand the etiology of fatigue and fatigability in JDM using cardiorespiratory measures. The project will measure oxidative stress and mitochondrial function as possible causes of fatigue. This is an important study for patients and families of those with JDM, as it is a common question as to why a patient with JDM continues to feel significant fatigue despite disease control.
    Award Amount: $130,000
  • Zoe Betteridge at the University of Bath in the United Kingdom to validate commercial testing labs to better enable these labs to conduct myositis-specific autoantibody testing. Currently, there are few labs in the U.S. or Europe whose work in autoantibody testing meets a "gold standard" for accuracy and breadth (testing for all known myositis auto antibodies). Dr. Betteridge's project will test and validate commercially available kits for myositis antibodies, potentially increasing the number of lab sites and lowering costs.
    Award amount: $65,000

A fourth grant was also approved, pending further discussions with the Principal Investigator.

Cure JM grants are made in concert with the Childhood Arthritis and Rheumatology Research Alliance (CARRA). CARRA provides independent grant reviewers from its membership. Cure JM thanks CARRA for assuming this important role.


CURE JM FUNDS NEW CENTER OF EXCELLENCE AT SEATTLE CHILDREN'S HOSPITAL

Seattle Children's Hospital Logo

Cure JM is excited to announce a third JM Center of Excellence at Seattle Children's Hospital (SCH) in Seattle, Washington.

Funding will be used to recruit a world-class JM specialist to lead the new Center and to provide additional training in JM care to the pediatric rheumatology staff at SCH. The Center of Excellence will also systematically engage other pediatric specialties such as cardiology, dermatology, and pulmonology in the care of JM patients.

Funding will also be used to create a new research position in Juvenile Myositis.

"This new Center of Excellence will be able to advance clinical care in the Northwest as well as stimulate a strong research environment in JM," says Suzanne Edison, Cure JM Board member and co-chair of its Research Committee.

"The grant will open up exciting JM research and innovation potential among the robust academic and biotech community in Seattle, and it will help Seattle Children's Hospital better serve JM patients in a large five-state area, furthering Cure JM's commitment to families."

The Seattle Center of Excellence will be the third such center to be funded by Cure JM, joining centers at Ann & Robert H. Lurie Children's Hospital of Chicago and George Washington University in Washington, D.C.

More information will be coming soon. Please contact Cure JM at info@curejm.org with any questions.


GIVING TUESDAY - NOVEMBER 28TH

Giving Tuesday Circled on Calendar

Save the date for the biggest day of the year! Cure JM is again 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 28th, will win $50,000 for its cause.

Cure JM has won a top prize the last four 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.  

You can help by planning to make a gift at www.curejm.org on November 28th.  More information coming as we get closer to the big day.

And calling all parents and grandparents! The next 20 NEW families to join the Holiday Challenge Team will have $250 donated to Cure JM in their honor, given by a generous donor.  To join the team or learn more please contact Shannon Malloy at shannon.malloy@curejm.org


PENNIES FOR PUMPKINS RAISES THOUSANDS OF DOLLARS FOR LAYLA AND CURE JM

Pennies for Pumpkins Mock Check

Howard B. Thomas Grade School teachers, staff and students present JM "Ninja Warrior" Layla (bottom center) with a mock check for over $3,000

Every year, the second grade students at Howard B. Thomas Grade School in Burlington, Illinois hold a "Pennies For Pumpkins" fundraiser to benefit a child with a chronic medical condition. The event promotes both literacy and compassion while uniting the school and local community behind a common cause.

This year, seven-year-old Cure JM Kid Layla Florido was the event honoree.

The second graders decorated 69 pumpkins based on characters from their favorite books. The pumpkins were put on display, and other students, staff, and parents voted for their favorites using coins and dollars. Winners were announced at the Halloween parade and a check was presented to Layla for the amount raised: $3,027.

Layla decided to show everyone in her Cure JM community that she cares about them and finding a cure, so she donated all the money raised to Cure JM Foundation. When asked about her choice to donate all the funds to Cure JM, Laya said, "I have to keep fighting because a fighter never quits."


UPCOMING EVENTS

Visit www.curejm.org/events or follow us on social media for additional updates. Contact info@curejm.org with any questions.

  • Cure JM Ohio/ Western Pennsylvania Chapter Kickoff Celebration
    Sunday, November 19th, Columbus, OH
  • CrowdRise Holiday Challenge - Giving Tuesday
    Tuesday, November 28th, 12:01AM - Midnight (EST). This is a "virtual" (online) event, so you can participate without ever leaving your home.
  • Louisiana New Chapter Kickoff Celebration
    Sunday, December 3rd, Prairieville, LA
  • 2nd Annual New York Chapter Educational Event
    Sunday, December 3rd, New York, NY
  • Southern California Chapter Kickoff Celebration
    Sunday, December 10th, Los Angeles, CA (in Hollywood)
  • Inaugural Florida Walk Strong to Cure JM™ 
    Saturday, February 10th, Orlando, FL
  • 2nd Annual Chicago Walk Strong to Cure JM™ 
    Sunday, May 6th, 2018, Warrenville, IL
  • Cure JM Foundation 12th Annual National Family Conference and Walk
    June 29th -July 1st, 2018, Key Bridge Marriott, Arlington, VA (Washington, D.C.Metro Area)
  • 2nd Annual Washington, D.C. Walk Strong to Cure JM™ 
    July 1st, 2018, Arlington, VA
  • 5th Annual Cowboy Brad Concert for Cure JM™
    Saturday, July 21, 2018, Estes Park, CO
  • 2nd Annual New York Walk Strong to Cure JM™ 
    October 2018, Scarsdale, NY
  • 3rd Annual Seattle Walk Strong to Cure JM™
    Saturday, October 6th, 2018, Redmond, WA

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