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

Vamorolone FAQ

Vamorolone FAQs in JM

With the looming FDA approval of the drug vamorolone in Duchenne muscular dystrophy, there are questions surrounding the drug’s status for trials in juvenile myositis. We have consulted with JM experts on the potential implications of a pending approval for the drug in another disease and what this currently means for JM patients living in the U.S.

Research Achievements

A task that seemed daunting 20 years ago, to change the world for patients diagnosed with juvenile myositis, is now within our reach.

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.

Interested in DIY fundraising but need help?

We’re here to help!

To have your fundraiser matched, add “DIY Match” in the memo of your online gift or check.