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Medical Network

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NEWSLETTER

April, 2017

Cure JM Launches Medical Network

Welcome to the NEW Cure JM Medical Network. This network was created for YOU: physicians, nurses, researchers, physical therapists and other healthcare professionals who are committed to improving the lives of patients with Juvenile Myositis. The purpose of this network is to ensure that healthcare providers remain well-informed about research advances, evolving standards of care, and other information of importance to Juvenile Myositis patients and your practice.

Cure JM will publish this eNews quarterly to keep you informed of drug trials, research grant opportunities, upcoming conferences, and much more.

Thank you for your contributions and dedication to the families and children who are fighting JM!

Please contact Beth Barrer at physicians@curejm.org if you have any questions or would like peer-support information (welcome kits and brochures) from Cure JM to give to your patient families.


Cure JM Currently Funded Research

Cure JM Executive Director James Minow

Cure JM has recently approved a round of new grants and is now currently funding nine research projects in addition to two Cure JM Centers of Excellence in Chicago and Washington, D.C.

“In my view, these grants are moving us in some exciting new directions in JM research, building on the important work that we have funded over the past 14 years,” says Cure JM Executive Director Jim Minow.

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Cure JM Funding Opportunities

Request for Proposals

Cure JM Foundation (Cure JM) announces its Request for Proposals for 2017 for advancing research to improve medical treatment, patient care, and work toward a cure for Juvenile Myositis. Grants are made in collaboration with the Childhood Arthritis and Rheumatology Research Alliance (CARRA).

Cure JM is a 501(c)(3) non-profit organization established in 2003. The mission of Cure JM is to find a cure and better treatments for Juvenile Myositis, and to improve the lives of families affected by JM. Cure JM is the leading global nonprofit organization funding Juvenile Myositis research. Cure JM has invested $11 million and supported over 130 research studies to accelerate the pace of research.

CARRA’s mission is to conduct collaborative research to prevent, treat and cure pediatric rheumatic diseases. Its approach is that CARRA members will work together to capitalize on opportunities, actively develop a structure and a scientific agenda, and collaborate with potential funding sources to create a research alliance that benefits our patients. For more information, visit the CARRA website at carragroup.org.

In 2017, Cure JM has committed to fund 2-4 new research grants up to $75K/year for up to 2 years with preference for individuals who have at least 25% protected research time from their institution.

Grant Application Process

An electronic letter of intent (LOI) submission form is required 30 days before the deadline for full application and must contain the project title, a brief description of the proposed research, the name, address and email address of the Principal Investigator(s), and any persons who might have a conflict of interest in reviewing the proposal. The LOI must be submitted electronically via this online form. The LOI is only to allow organization of the review process, and all projects submitting an LOI will be permitted to submit a full application.

Proposals should be submitted electronically as one single PDF format file via this online submission form and must be received by the submission deadline for applications stated in the research announcement timeline. (See Grant Application for specific information.)

Timeline

Request for Proposals Begins

March 31, 2017

Letter of Intent Deadline

May 15, 2017

Application Deadline

June 15, 2017

Review of Submitted Applications Completed

September, 2017

Anticipated Date for Notification of Awards

October, 2017

Anticipated Funding Start Date

November 1, 2017

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Research Studies Needing Patients

Volunteers are desperately needed for the AID Clinical Trial (Abatacept In Juvenile Dermatomyositis).

The Abatacept clinical trial at George Washington University is currently enrolling patients with Juvenile Dermatomyositis (JDM), including adults and children who are at least 7 years old. Study participants must have moderately active disease despite treatment with prednisone and at least one other medication. Travel funds and compensation is available for study participants for five study visits after screening. You can enroll your patients or get more information by contacting Sirlekar Bullocks at sbullocks@mfa.gwu.edu or by calling (202) 750-0377.

Click Here for a Study Overview

Click here for additional research studies needing patients.

Please contact Shari Hume at shari.hume@curejm.org with any questions.


2nd Global Conference on Myositis (GCOM)

Cure JM Foundation is honored to be one of the sponsors for the 2nd Global Conference on Myositis (GCOM), which will be held Fri. - Mon., May 5-8, 2017 in Potomac, Maryland.

GCOM is an international, interdisciplinary scientific conference held every 2-3 years, encompassing recent advances and cutting-edge research in all areas of Myositis. We also emphasize the participation of young investigators and trainees to build future capacity in Myositis research labs around the world.

GCOM’s agenda is full of rich myositis content, and we want to highlight a few key sessions sponsored by Cure JM Foundation:

  • Juvenile Myositis Pre-Conference Workshop (Fri 8-11am)
  • Research Directions in Juvenile Myositis (Sat afternoon breakout 3:15-6:30pm)

Your participation is greatly valued and this conference will be critical in:

  • Generating the agenda for future Juvenile Myositis research
  • Fostering further collaboration
  • Advancing the development of young investigators and trainees

Full details, including registration, agenda and abstract submission details are on GCOM website at: www.gcom-int.com. Please register early, as space is limited.

REGISTER NOW


Austin Summary

Cure JM Medical Asvisory Board fielding questions during conference session

Cure JM Medical Advisory Committee members Dr. Ann Reed, Dr. Adam Huber, Dr. Lauren Pachman, and Dr. Lisa Rider answer family questions during the Conference General Session.

Friday, February 17, 2017, 40 medical professionals from across the state of Texas came together for Cure JM’s 7th Medical Conference co-sponsored by Cure JM and Dell Children’s Medical Center of Central Texas. The conference was open to anyone in the medical community with a special focus on those in pediatrics, rheumatology, dermatology, and neurology. It was a FREE CME activity offering up to 6 AMA PRA Category 1 Credit(s)™. At the medical conference, Grand Rounds, “An Overview of Juvenile Myositis in 2017” was presented by Ann Reed, MD, Chair, Department of Pediatrics, Duke University School of Medicine. Additional presentations are listed below.

Many of these same physicians and researchers stayed on Saturday February 18 and presented to the 120 Cure JM families who had gathered in Austin for Cure JM’s National Family Educational Conference. At the family conference, many families also participated in the blood and sample collection for Cure JM’s upcoming genetic identification program with the Center for Applied Genomics at Children’s Hospital of Philadelphia. Some 45 families provided almost 400 samples for whole exome genetic sequencing at CAG, and many families were able to provide samples from the patient, parents, grandparents, siblings, and other family members. Additional families will be participating from home in this study over the next several months.

Additional presentations at the 2017 Cure JM Medical Conference included:

  • Welcome and Conference Overview, Steven Abrams, MD, Chair of Pediatrics, Dell Medical School; Director, Dell Pediatric Research Institute and Mitali Dave, President, Cure JM Foundation
  • Labs, Imaging, and What they Mean in Juvenile Myositis, Adam Huber, MD, Staff Pediatric Rheumatologist, IWK Health Centre, Halifax, Nova Scotia
  • Skin Signs of Rheumatological Disorders including Juvenile Myositis, Moise Levy, MD, Physician-in-Chief, DCMC; Chief, Pediatric Dermatology, DCMC
  • Non-Biologic Treatment of Juvenile Myositis: 2017 Update, Lauren M. Pachman MD, Professor of Pediatrics, Northwestern University Feinberg School of Medicine; Director, Cure JM Program of Excellence in JM Care and Research
  • Emerging Applications of Metabolomics in Precision Medicine, Stefano Tiziani, PhD, Assistant Professor, UT Austin
  • Remarks from Dell Children’s Medical Center, Mark Shen, MD, President, DCMC
  • Potential New Treatments with Biologics and Drug Therapies for Juvenile Myositis, Lisa Rider, MD, Deputy Chief, Environmental Autoimmunity Group, National Institute of Environmental Health Sciences, National Institutes of Health
  • Transitioning from Pediatrics to an Adult Medical Home, Ankur Kamdar, MD, Assistant Professor of Pediatrics, UT Health Houston
  • Patient - Provider Experience, Ruy Carrasco, MD, Division Chief, Rheumatology, DCMC
  • Case Studies, Kaveh Ardalan, MD, Lurie Children’s Hospital of Chicago, Colleen Correll, MD, University of Minnesota, and Megan Curran, MD, Lurie Children’s Hospital of Chicago

Cure JM Family Educational Events

Cure JM is excited to announce expansion of its new series of regional chapters and family educational events. In 2017, Cure JM will expand its regional chapter program to 10 regional chapters.

In each region, local healthcare professionals will be invited to the Family Educational Sessions where a pediatric rheumatologist will present to families on topics of interest to Cure JM families and answer questions from families. In 2017, regional educational events will be organized by Cure JM Chapters in Seattle, Chicago, Washington D.C., New York City, Dallas, Austin, and Houston, with more locations to be announced soon. Contact Shannon Malloy at shannon.malloy@curejm.org with any questions.

Cure JM Logo

Cure JM Foundation is the leading global nonprofit organization funding Juvenile Myositis research. Cure JM has invested $11 million and supported over 120 research studies to accelerate the pace of research. Our mission is to find a cure and better treatments for Juvenile Myositis and improve the lives of families affected by JM.