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NEWSLETTER

Summer, 2018

2018 Update on Juvenile Myositis Care and Research

Medical Conference Attendees

On June 29th, 90 members of the medical community from across the United States convened in Washington, D.C., for our sixth annual Update on Juvenile Myositis Care and Research. The conference was open to anyone in the medical community interested to learn more about diagnosis and care of Juvenile Myositis and related autoimmune diseases. It was a free CME activity offering up to 6 AMA PRA Category 1 Credit(s)TM.

Conference learning objectives included:

  • Best practices in diagnosing and treating Juvenile Myositis (JM) patients.
  • How to apply the latest developments in myositis research to clinical care.
  • Examining specialized management issues relevant to JM patients.

The conference featured research updates from the world’s preeminent JM researchers, including Grand Rounds presented by Lisa Rider, MD, Deputy Chief of the Environmental Autoimmunity Group, National Institute of Environmental Health Sciences, National Institutes of Health. Additional presentations are listed below.

Many of these same physicians and researchers led and participated in educational sessions during Saturday’s Cure JM National Family Educational Conference.

At the family conference, many families participated in the blood and sample collection for Cure JM’s genetic identification program with the Center for Applied Genomics at Children’s Hospital of Philadelphia. The advanced sequencing facility and biobank seeks 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. This program is led by Hakon Hakonarson, PhD, MD, and Charlly Kao, PhD.

“When conducting rare disease research, being able to collect samples from so many families in one weekend is a unique opportunity,” says Dr. Kao. “We were pleased that after just two visits to Cure JM conferences that we already collected samples from 300+ different individuals representing over 70 families. This speaks to the commitment, support, and enthusiasm of the Cure JM organization and their families, and 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.”

Presentations included:

Juvenile Myositis Pathogenesis & Pathophysiology
Kanneboyina Nagaraju, DVM, MVSc, PhD, Cure JM Foundation Medical Advisory Board Member, Founding Chair and Professor, Pharmaceutical Sciences, Binghamton University, State University of NY

Juvenile Myositis Phenotypes as Predictors of Response to Treatment
Ann Reed, MD, Chair, Department of Pediatrics, Duke University School of Medicine

Juvenile Myositis Complications and Clues
Lauren M. Pachman MD, Professor of Pediatrics, Northwestern University Feinberg School of Medicine; Director, Cure JM Program of Excellence in JM Care and Research

New Myositis Autoantibodies and Immune Mediated Necrotizing Myopathy in Juvenile Myositis
Andy Mammen, MD, PhD, Muscle Disease Unit Leader in the Laboratory of Muscle Stem Cells and Gene Regulation, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health

Exercise for Juvenile Myositis Patients
Brian Feldman, MD, MSc, FRCPC, Professor of Pediatrics & Medicine, Faculty of Medicine, and the DLSPH University of Toronto Head, Division of Rheumatology SickKids

Grand Rounds: Juvenile Myositis Basics
Lisa Rider, MD, Deputy Chief of the Environmental Autoimmunity Group, National Institute of Environmental Health Sciences, National Institutes of Health

Skin Disease in Juvenile Myositis: Assessment, Sun Protection, & Treatment
Susan Kim, MD, MMSc, Associate Professor, Associate Clinical Professor of Pediatrics, University of California, San Francisco Department of Pediatrics

Calcinosis: Assessment & Treatment
Adam Schiffenbauer, MD, Staff Clinician, Environmental Autoimmunity Group, National Institute of Environmental Health Sciences, National Institutes of Health

Mental Health Needs of JM Patients & Potential Interventions
Andrea Knight, MD, MSCE, Attending, Division of Pediatric Rheumatology, Children’s Hospital of Philadelphia

Case Studies
Moderated by Rodolfo Curiel, MD, Associate Professor of Medicine at George Washington University Director, George Washington University Myositis Center

Conference videos are forthcoming. We'll contact you with an email when the videos are live. Once live, videos are eligible for CME credit until June 29, 2019.

Save the date for the 7th Cure JM Update on Juvenile Myositis Care and Research, on Friday, June 21, 2019, in Chicago, IL. More details coming soon.


Andrew Heaton Appointed Cure JM Chief Scientific Officer

Andrew Heaton Ph.D.

The Cure JM Foundation has appointed Dr. Andrew Heaton as its first Chief Scientific Officer.

Dr. Heaton brings a 30-year career in pharmaceutical discovery, development, and translational studies, and most recently served as the CEO and President of Heaton-Brown Life Sciences and Novogen North America. Dr. Heaton, ushered several oncology compounds from the laboratory through Phase I, II and III clinical trials.

James Minow, Executive Director of Cure JM said: “Andrew has exceptional experience and a strong track record of innovation in the fields of biotech, drug development and business development. His dedication to finding treatments to rare and life-threatening diseases and compassion for patients and families make him the ideal choice to lead our research program to the next level of achievement.”

The CSO will serve as Cure JM’s science and research leader, proactively driving the growth and effectiveness of Cure JM’s grants and clinical research program. In addition, the CSO will provide strategic oversight, guidance, and leadership to the Cure JM Research Priorities. Dr. Heaton will serve as key staff to Cure JM’s Research Committee and Medical Advisory Board.

Dr. Heaton received his Bachelor of Science degree from the University of Tasmania, his doctorate from James Cook University of North Queensland, his MBA from Melbourne Business School, and completed a sabbatical at Imperial College, London.

Dr. Heaton is the senior author on over 100, globally granted-patents, covering a wide range of molecular architectures and diseases and has published multiple papers in peer-reviewed scientific journals.

On joining the Cure JM Foundation Dr. Heaton said “It is an honor and privilege to work with an outstanding forward-thinking foundation. Together we have a shared passion for combating rare diseases. I look forward to working with MAB and the Foundation’s Research Committee in translating the research that has been completed and is underway into directed patient-based outcomes.”


Duke Children’s Named Cure JM Center of Excellence in Juvenile Myositis Care

The Duke Children’s Hospital and Medical Center has been named a Center of Excellence by the Cure JM Foundation.

This designation has been made in recognition of Duke’s the institution’s focus on JM care and research through its Juvenile Myositis Clinic.

Duke’s Juvenile Myositis Clinic is building a strong community of care with the cooperation of experienced autoimmune disease specialists and Myositis-focused trainees. Gathering together specialists from rheumatology, neurology, physical therapy, and psychosocial support, the clinic diagnoses, treats, and improves the lives of those living with Juvenile Myositis.

The clinic currently serves families from across the southeast, and its strong reputation also attracts patients from across the nation and the world. The Cure JM Board of Directors made this designation in recognition of Duke’s outstanding leadership in Juvenile Myosotis care.

“Duke’s dedication to high quality clinical care and commitment to impactful research truly make the institution a standout for JM families,” said Jim Minow, Executive Director of the Cure JM Foundation. “This designation is an honor that is both earned and well-deserved.”

Dr. Ann Reed

Dr. Ann Reed

Historically, Cure JM has funded research projects at Duke and supported the research work of Ann Reed, M.D. Dr. Reed is the Chair of the Department of Pediatrics at Duke, is a renowned Juvenile Myositis expert, and serves as a member of the Cure JM Medical Advisory Board.

“It is an honor to be named as a Cure JM Center of Excellence. I appreciate the great progress this organization has made to excel education, clinical care and discoveries for Juvenile Myositis,” said Reed. “We at Duke bring a team-based approach to our care, including a rheumatologist, neurologist, gastroenterologist, endocrinologist, physical and occupational therapy, nutrition, and behavioral health. All come together to care for our patients and families. We are very excited to continue our longstanding work in Juvenile Myositis and find new discoveries to work toward a cure.”

Some of the distinctions of the clinic include:

  • Longitudinal, multidisciplinary care that partners with primary care providers, specialist providers, and referring myositis care providers.
  • Psychosocial support for patients and their families.
  • Access to relevant clinical trials and research study information.
  • Opportunities to participate in advanced genetic research.
  • Assessment and transition for young adults into adult care.

Duke joins three other institutions in the Cure JM Center of Excellence network, including Stanley Manne Children's Research Institute, affiliated with Ann & Robert H. Lurie Children's Hospital of Chicago, George Washington University Myositis Center, and Seattle Children's Hospital.

Contact info@curejm.org with any questions.


Registration for the 2019 Global Conference on Myositis Is Open

The goal of the conference is to bring together the world’s leading experts on Myositis to advance the field of Myositis research through collaboration and clinical trials.

Early Bird registration is open until November 2018. Conference info and registration is here.


Research Studies Needing Patients

Help fellow researchers find the cause and a cure for JM by connecting volunteers with these important studies.

Questions? Contact info@curejm.org.


Join the Cure JM Medical Network

Researchers

Healthcare Professtionals at the 2018 Cure JM National Family Conference

This network was created for YOU: healthcare professionals who are committed to improving the lives of patients with Juvenile Myositis.

We’ll keep you well-informed about research advances, evolving standards of care, and other information of importance to Juvenile Myositis patients, including drug trials, funding opportunities, upcoming conferences, and much more.

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

Please contact Shannon Malloy at shannon.malloy@curejm.org if you have any questions, would like peer-support information, or would like welcome kits and brochures to give to your patient families.

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Thank you for your contributions and dedication to the families and children who are fighting JM! Please contact Shannon Malloy at physicians@curejm.org if you have any questions or would like patient support information (welcome kits and brochures) from Cure JM to give to your patient families.