Advocates Council

The Cure JM Advocates Council is a forum for connection between young adult patients aged 18-30 to participate in the advancement of Cure JM’s mission.

 

All adults living with JM are invited to join the Advocates Council. Please contact Betsy Leon at betsy.leon@curejm.org to be added to our invitation list.

 

We, as patients, know first-hand how treatments affect our lives, what resources are important to us and our families, and other valuable insights.

 

Our aim is to contribute our time and talents to advancing Cure JM’s mission to find better treatments and a cure while supporting patients and families in the process.

Cure JM Advocates Council Member James presents to the NIH during Rare Disease Day.
Advocates Council: Let Your Voice Be Heard by Joining the Cure JM Advocates Council
Teens and young adults discuss the best way to advocate for children affected by juvenile dermatomyositis and juvenile polymyositis.

Our Mission

To connect with other young adults. By connecting with other adults, and learning their stories, we can ensure Cure JM’s mission is moving forward with the best interests of the patients they serve.

 

To support younger patients. By sharing our experiences, we hope to help enhance the resources and support available to the next generation of pediatric patients and teens.

To contribute to the understanding of Juvenile Myositis. By informing family members and supporters of our firsthand experience, we can ensure that decisions are made in the best interest of patients.

To move research forward. By participating in meetings with researchers and industry representatives, clinical trials, and other initiatives, we aim to have a role in the future of juvenile myositis research.

 

We meet monthly on Zoom to connect, plan and carry out the work of the Advocates Council. We also meet every other year in person at the Cure JM National Family Conference.

 

ADvocates Council officers

Anna RamseyAnna Ramsey
Chair, Advocates Council
Director, Cure JM Board of Directors

Austin Krainz Austin Krainz
Vice Chair, Advocates Council

Alex HackneyAlex Hackney
Vice Chair, Advocates Council

Maddy CoffeyMaddy Coffey
Vice Chair, Advocates Council

Pioneers in JM – Advocates Scholarship

We are excited to share a special educational opportunity for collegiate JM patients who are using their own JM experience to lead and inspire.

The Pioneers in JM Advocates Scholarship is intended to be awarded to three deserving students with juvenile myositis who: impact the juvenile myositis community through their volunteer and leadership efforts and/or inspire the juvenile myositis community by overcoming adversity while empowering others to do the same. 

Click below to learn more!

Click here

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