Share/Bookmark

Cure JM Logo

Medical Network


NEWSLETTER
Winter, 2022

VIRTUAL SYMPOSIUM

Juvenile Dermatomyositis: Advances in Basic Research, Translational Studies and Clinical Care

Please join us for this virtual event with 2 sessions with presentations from top leaders in the research and treatment of JDM. The symposium is hosted by Cure JM Foundation and Duke University Cure JM Center of Excellence. Three CME credits are available—Joint Accreditation (AMA PRA Category 1, ANCC).

 FULL AGENDA AND REGISTRATION 


Cure JM Funds Three New Grants

Grantee: Dr. Sarah Tansley, Bath University UK

Title: Novel MSA Biomarkers in Juvenile Myositis

Summary:

Juvenile Myositis is an incredibly variable disease ranging from milder disease that responds to standard medications to severe disease which causes damage despite aggressive treatment. Myositis autoantibodies (MSA) are markers present in the blood of myositis patients. More than ten different MSA have been identified in JM patients and each is a marker for a different subgroup. MSA highlight those patients at greatest risk of chronic disease, treatment resistance and important complications such as lung involvement, ulcers and calcinosis. MSA can be identified in approximately 60% of JM patients who benefit from this additional information to plan treatment and further tests. MSA are likely to be important in developing a personalized approach to treatment in JM. The ability to target existing and novel treatments to those patients most likely to benefit will enable more rapid disease control and reduced side-effects.

This new grant at Bath UK focuses on the often forgotten 40% of JM patients labelled as 'MSA negative.' Preliminary data from the Bath group suggest that these patients are not in fact all the same, and that yet to be discovered MSA markers are present in this group. Using blood samples already collected from a large UK JM study of over 500 patients specially adapted MSA detection methods will be deployed to identify 'new' MSA in this group. Critically both the characteristics of patients JM diagnostic presentation and any new MSA will be fully documented, expanding the personalized medicine approach for this cohort of JM patients.

Grantee: Dr. Sara Sabbagh, Medical College of Wisconsin

Title: T cell differentiation and T-reg/Th17 balance in a myosin-induced mouse model of experimental autoimmune myositis

Summary:

JDM is characterized by the body's immune system attacking own muscle tissues, which results in inflammation and weakness. Many different types of immune cells contribute to this process, but what drives the formation of these different cell types is unknown. Certain subpopulations of immune cells: T-helper 17 cells (Th17) and T-regulatory cells (Treg) are thought to contribute to the development of JDM. Both the amount of inflammation and the relative population of other immune cells can affect the number of Th17 and Treg cells. Modelling these differences and how they affect the relative proportions of Tref and TH17 cells is potentially pivotal in understanding the course of JDM. Here we propose that dysregulation. The group led by Dr. Sabbagh aims to generate a mouse model of myositis investigating the effect different populations of immune T cells have on the relative populations of TH17 and Treg cells.

Using mice as a model for human muscle disease is a useful tool as the observed disease course and muscle tissue alterations are similar to human disease. The benefits of using a mouse model also include the ability to investigate genes of interest in specific cell types and to trial different therapies in the model.

Grantee: Dr. Jayne MacMahon, SickKids, Toronto, Canada

Title: Interferon Scores in Juvenile Dermatomyositis and Correlation with Disease Activity

Summary:

Juvenile Dermatomyositis is a potentially damaging autoimmune disease. Even with treatment, 60% of patients will have ongoing disease activity. This leads to complications that impact day to day life. Predicting which patients are at risk can be challenging. This leads to patients being undertreated and other patients being overtreated.

A marker, called 'interferon' has been found in the blood of patients with JDM. This seems to be an important marker in the trajectory of JDM. A scoring system based on this marker has been developed. Initial work in Toronto has indicated that this interferon score is linked to disease activity in patients with JDM. To prove this the Toronto group will investigate the interferon score in blood samples from patients with JDM.

A comparison of the results of the interferon score to the disease activity levels at the time the sample was taken will be used to refine a correlative mode. Highly detailed information on disease activity at each clinical visit. De. MacMahon's group plans to prove that the interferon score and disease activity are linked. The ultimate goal is in the future, this score model could be used to predict which patients are likely to have ongoing disease activity. This will help to guide treatment and prevent complications. Ultimately, Dr. MacMahon wants to publish the interferon score algorithm and have it utilized to improve long term outcomes for all children with JDM.


Cure JM Mental Health Initiative:
Evolution and Growth

By Suzanne Edison, Mental Health Coordinator

Suzanne Edison

Suzanne Edison, MA, MFA

In September 2021 we launched our new Emotional and Mental Health Initiative to provide more support and resources to families, patients, and medical providers. This program had been in development for more than two years during my tenure as, a Cure JM Board Member, Research Committee co-chair, and parent advocate with CARRA's Mental Health Working Group. Other Cure JM members had also pushed for more attention in this area. As a result, we seek to make the connections between physical and emotional/mental health part of our ongoing research and educational approaches.

Using the research Drs. Andrea Knight, Kaveh Ardalan, and others conducted through focus groups for parents on the emotional health issues they felt needed to be addressed, I also surveyed our families to see what else was needed. Now, I have put several programs for families and providers into operation. I have also created a Mental Health Advisory Group made up of 3 pediatric rheumatologists, 5 parents of JM kids of various ages and 1 young adult living with JM, to help guide me in this mission.

Goals for Providers

  • To assist Pediatric Rheumatology clinics and practitioners across North America in expanding their emotional and mental health awareness, resources, and treatment pathways for patients and families.
  • To increase the training and comfort in addressing mental health issues for PedRheum Fellows and practitioners.
  • To increase the research options in mental health and JM.

Goals for Family/Patients

  • To increase the print, digital and personnel resources available for mental / emotional health.
  • To provide forums for parental support and discussion on social media, through Town Hall events, support groups (held via Zoom), and on our website.
  • To develop a list of therapists and national resources for psychological care.
  • To develop a Peer Mentor program for tweens and teens—matching older teens & young adult JM patients with younger mentees.

Additionally, we have significantly revised our emotional and mental health web pages for families, patients and providers, adding many state resources, links to books and articles, information on anxiety and depression with a downloadable PDF, hotlines, and more.  We will be revising our entire website this year, so look for a new Teen Portal. In the meantime, I hope you will take some time to peruse the site. www.curejm.org/mentalhealth

There is a monthly, facilitated, parent support group for Cure JM members @
signupgenius.com/go/ 60b044dacae2aa4ff2-emotional

An emotional and mental health support group for parents on Facebook @
facebook.com/groups/ curejmemotionalsupport

To date I have had personal meetings with 5 Pediatric Rheumatology clinics and have sent out letters to around 30 providers sharing this information and offering to meet and discuss how Cure JM might be of further assistance.

In December 2021we conducted a Zoom Town Hall on How to Talk to Your Child about Emotional & Mental Health with child psychologist, Stacey Haynes; Dr. Megan Curran, pediatric rheumatologist; Annie Mitchell, JM mom; and Anna Ramsey, young adult living with JM. This video is now available on our website.  In March we will hold another Town Hall on Pain and Mental Health issues. This time we will have two panels, one with providers: Tonya Palermo, Ph.D; Natoshia Cunningham, Ph.D., and Dr. Andrew Shulman. The second panel will be made up of two JM parents with kids of different ages and a young adult with JM.

Additional programs in development include a CARRA workshop for Fellows and Early Investigators on how to have conversations about emotional and mental health with patients and families and a document on this same topic based off of the American Board of Pediatrics RoadMap Project and comments from JM parents about what they wish their providers would ask them about.

If you have any questions, or wish to know more, I am happy to set up meetings with you or your team. suzanne.edison@curejm.org.


Mental Health Town Hall

March 17, 2022
5-6:45pm PST, 7-8:45 CST, 8-9:45 EST

Goals of this Town Hall:

  • Increase awareness about the relationship of pain and mental health issues
  • lluminate resources / treatments parents can advocate for
  • Ways to assess & address pain for JM kids at home

Presenters Include:

Tonya Palermo, PhD

  • Factors affecting chronic illness pain and disability including psychological/ emotional factors, social factors, and health/lifestyle factors
  • Overview of treatment approaches with an emphasis on pain self-management interventions
  • Resources available for pain management including online resources

Andrew Shulman, M.D.

  • Pain is both a symptom of JM, and can be modified by how a person deals with it...
    • When is pain part of an amplified pain process?
    • How do you determine this, and...
    • How do you help the person manage / treat it?

Natoshia Cunningham, PhD

  • What is the relationship between pain and anxiety?
  • Is CBT the main intervention you use with teens / Young adults for pain?
  • Other interventional treatment modalities: when and how they are used; including biofeedback
  • The use of neuro-imaging techniques

 REGISTER NOW 


This issue is brought to you with the support of:

Octapharma Logo

CSI Pharmacy Clinical Specialty Infusions, LLC
Pharmaceutical Companies of Johnson & Johnson

Cure JM welcomes your input, questions and experiences. Please email james.minow@curejm.org to share your input.