Grandparent Council

What is the Grandparent Council? 

We are grandparents of a grandchild living with juvenile myositis. 

Our mission as grandparents is to learn about juvenile myositis and support each other so we can support our grandchildren and their families.  We also help advance Cure JM’s mission to give our grandchildren the best shot at a bright future ahead.

Our Goals Are: 

To connect with other grandparents.  We’re stronger together. By connecting with other grandparents and learning their stories, we can better understand juvenile myositis and how we can support our grandchildren and their siblings and families.  

To support our grandchildren and their families.  Through the Grandparent Council, grandparents will be introduced to other grandparents and can connect with other grandparents to learn how they support their grandchildren.

To learn about Juvenile Myositis.  Juvenile Myositis care and research is an emerging field.  By learning about this disease, we can best support our families. 

To make a difference for our grandchildren.  Grandparents have expressed interest in getting involved.  By getting involved, we can move Cure JM’s mission forward for our grandchildren.  This will help give our grandchildren the best shot possible at a full life ahead. Many hands make light work. 

When does the Grandparent Council meet? 

The Grandparent Council meets monthly by phone.  The monthly phone meetings are a chance for Grandparents to connect with each other and plan the work of the Grandparent Council.  

The Grandparent Council meeting will also have occasional guest speakers, such as researchers and physicians, who will give updates on the latest in juvenile myositis research and care.  These sessions give Grandparents a chance to learn and ask questions of the researchers and physicians. 

We also meet in person every other year at the Cure JM Family Conference.

All grandparents are invited to participate. To be added to the invitation list, please contact Betsy Leon at Betsy.Leon@curejm.org

Grandparent Council Leadership– Randy Putt

Ellen Stream’s Story: Walking and Quilting for JM Families

Ellen Stream’s love for her granddaughter, Brooklyn, fuels her commitment to the juvenile myositis community. When Brooklyn was diagnosed with juvenile dermatomyositis (JDM) at two and a half, Ellen faced a wave of fear. Would Brooklyn run and play like other kids? Could she enjoy school, sports, or friendships without the weight of infusions and flare-ups? Those early days brought uncertainty, but Ellen and Brooklyn’s other grandmother built a support system across miles, showing distance doesn’t dim love.

Cure JM Partner Researcher Uncovers New Biomarkers. Fionnuala McMorrow. University of Bath, UK

Cure JM-Funded Researcher Uncovers New Biomarkers

With your financial support, Cure JM is proud to have funded Fionnuala McMorrow, a Postgraduate Research Student in the Department of Life Sciences at the University of Bath, to embark on a critical research project. Fionnuala’s team analyzed blood samples from the UK to investigate two specific biomarkers (anti-CCAR1 and anti-Sp4) recently identified in U.S. patients with JDM and related conditions

Parent and Teen Mentor Image

Parent and Teen Mentors

Feeling Lost After a Myositis Diagnosis? Find Support with Cure JM Mentors! Cure JM is a strong community – a “Family of Families” – and

Join Cure JM

Membership is free and we’ll connect you with a network of support, encouragement, and resources.

Cure JM supports families, patients, and the juvenile myositis research community.

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