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CURE JM RESEARCH PRIORITIES PROVIDE “ROADMAP TO A CURE”

The Cure JM Board of Directors has recently approved a comprehensive set of strategic research priorities intended to guide future grants and investments in support of Cure JM’s mission to find a cure, better treatments, and improve the lives of families living with JM.

The research priorities incorporated survey response data from patients and parents of children with JM as well as clinician and researcher review from the Cure JM Medical Advisory Board.

Priorities fall into four broad areas of research: Accelerating Scientific Discovery (basic research to better understand the causes of JM); Expediting Development of Treatments (improved therapies delivered to patients); Providing Access to Quality Care (highest quality care to patients currently and in the future); and Fostering Collaboration (sharing knowledge, data, and resources to speed research advances and improve clinical care).

“The Research Priorities will serve as our ‘Roadmap to a Cure’ for years to come,” says Mitali Dave, Cure JM Board President and co-chair of the committee that developed the strategy. “I’m so appreciative of the vision, dedication and hard work the board and our advisors committed to its development.”

While Cure JM is funding projects in many of these areas already, the need to expand to larger-scale pre-clinical studies required to support clinical trials is critical to new therapy development.

“The task before us now is to find the funding necessary to bring us to the next level in the research and discovery process,” says Dave.   “Each potential new therapy will cost millions of dollars to move through the development pipeline. Cure JM will need to be financially prepared to be an effective partner with the academic and industry research communities to advance the most promising projects.”

VAMOROLONE UNDER STUDY AS POTENTIAL TREATMENT FOR JDM

Representatives of the Cure JM Foundation attended a recent planning meeting to focus on the design of a possible clinical trial for a potential steroid replacement for the treatment of Juvenile Dermatomyositis. The compound, Vamorolone, is currently in a Phase II clinical trial in 48 Duchenne Muscular Dystrophy children, and biomarker studies have suggested improved safety relative to prednisone.

Vamorolone is a dissociative steroid that retains anti-inflammatory activities while reducing or eliminating common side effects. Phase 1 clinical trial data was recently published at www.sciencedirect.com/science/article/ pii/S0039128X1830045X.

Cure JM is working with Vamorolone’s sponsor, ReveraGen, to design a biomarker-focused “clinical de-risking” JDM trial. Cure JM Medical Advisory Board member Dr. Lauren Pachman serves as the co-principal investigator on a pending NIH grant with ReveraGen CEO Dr. Eric Hoffman. Other Medical Advisory Board members attending the planning meeting were Dr. Lisa Rider and Dr. Kanneboyina Nagaraju.

2018 CURE JM REQUEST FOR PROPOSALS AND GRANT DEADLINES

Cure JM is now accepting Requests for Proposals for advancing research to improve medical treatments, patient care, and advancements toward a cure for Juvenile Myositis. New research awards are a maximum of $75,000 per year for up to two years, with preference for individuals who have at least 25% protected research time from their institution.

Applicants should address how their project supports Cure JM’s Strategic Research Priorities (see related article).

A one-page Letter Of Intent (LOI) is required 30 days prior to the deadline for the full application and must contain the project title, a brief description of the proposed research, the name, address and email address of the Principal Investigators, and any persons who might have a conflict of interest in reviewing the proposal. The LOI should be submitted electronically to: research@curejm.org. All applicants submitting an LOI will be invited to submit a full application.

Proposals should be submitted electronically as one single PDF file to: research@curejm.org and must be received by the submission deadline, July 1, 2018.

DOWNLOAD GRANT APPLICATION IN PDF FORMAT

Application Timeline

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12^th ANNUAL FAMILY CONFERENCE

Space is limited! Register now for the Cure JM National Conference, Friday June 29 through Sunday July 1 at the Key Bridge Marriott in Alexandra, VA.

At the conference, families will connect with over 100 other Cure JM families and interact with prominent physicians and researchers from across the U.S. and around the world.

REGISTER NOW

View the full agenda here. Presenters at the Family Conference include:

Cost to attend the conference is $100.00 per adult and children attend at no charge. For more information visit www.curejm.org/conference, contact conference@curejm.org or call (760) 487-1079.

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.

• Inaugural Minnesota Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk Saturday, May 19, Minneapolis, MN
  CLICK HERE TO REGISTER OR LEARN MORE
  Contact lauren.alvord@curejm.org
• 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

UPCOMING EVENTS

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

• 2nd Annual Cure JM Family Educational Event Presented by the Pacific Northwest Chapter of Cure JM
  Saturday, May 19, Seattle Children's Hospital, 4800 Sand Pt Way NE, Seattle, WA 98105
  Contact suzanne.edison@curejm.org.
• Annual Cure JM Family Educational Event Presented by the Massachusetts Chapter of Cure JM
  Sunday, May 20, Boston Children's Hospital, 9 Hope Ave. Waltham, MA 02453
  Contact chris.bokis@curejm.org.
• Massachusetts Chapter Golf Tournament 2018
  Monday, May 21, Halifax, MA 02338
  CLICK HERE TO PURCHASE TICKETS OR SPONSORSHIP OPPORTUNITIES or contact Cure JM Massachusetts Chapter President Chris Bokis at (508) 735-0966 or chris.bokis@curejm.org.
  VIEW/PRINT A FLYER
• 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 to learn more.
• 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
• 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.