Regional & Virtual Events
We are excited to share upcoming regional and virtual community events that support our mission.
This page is your single stop for “being in the know” on upcoming regional events, online patient and family support meetings, and educational symposiums happening in person and online.
Join us in connecting with other families!
Virtual Event
Parent Support Group
Our next parent support group will be led by Candace Domayer Ellrich (therapist and JM parent) and co-facilitated by Michelle McNaught Best, JM mom and NAMI support group leader. They will touch on the topic of kids in distress and how to manage possible suicidal ideation or talk of “not wanting to be here.” Along with the various permutations of this they will also present resources and ways to get help.
Virtual Event
January Town Hall
As the New Year rises, a hopeful horizon brightens for Cure JM. It is with great thanks to our Cure JM community for your extraordinary commitment to funding new research as we move into 2024. Celebrate the achievements with us as we review our community’s impact and our goals for the new year.
Jim Minow, Executive Director, will update us on recent research breakthroughs, new treatment options, and plans to expand Cure JM’s Clinical Care Network.
Andrew Heaton, Chief Scientific Officer, will update families with the latest information on new treatments on the horizon, including deucravacitinib and vamorolone.
Shannon Malloy, Director of Family and Community Engagement, will update us on the latest developments in physician education programs, family education and support programs, and our plans for family connections in the coming year.
After the call, families are invited to stay on the line for a brief social time featuring breakout rooms for parents, grandparents, and young adult patients.
Virtual Event
Grandparents Council Call
We invite you to join our next Grandparent Council meeting one week early on Thursday, November 16th, 2023.
Connect with other grandparents and learn how to provide support to families along their JM journeys.
The Grandparent Council meets on the 4th Thursday of every month.
Virtual Event
Advocates Council Call
Join our Advocates Council Meeting where we invite young adults to share their experiences and move forward ideas to support Cure JM’s mission to improve treatments and quality of life for all JM patients. Your voice matters! Please register and share your thoughts with us.
Regional Event
Cure JM Family Day with Lurie Children's Hospital
Cure JM Family Day is a fun and interactive day for the whole family. Parents can learn about different topics related to juvenile myositis from doctors from Lurie Children’s, Children’s Wisconsin, and the University of Chicago Medicine. Meanwhile, children will be enjoying fun supervised activities. Teens and Young Adults can decide if they prefer to attend the educational sessions or enjoy social time and ice breaker activities with other teens and young adults.
Regional Event
Cure JM Family Day, D.C.
Cure JM’s Clinical Care Network is excited to invite you to Cure JM Family Day, D.C. Join other JM families for a fun and informative event with doctors from our Cure JM Clinical Care Network.
There will be separate fun and supervised activities for kids as well as a teen’s room while parents, grandparents, and other adult family members are in educational sessions with the doctors. There will be time to connect with both the doctors and other families and a social event to close out the day.
Regional Event
Cure JM Regional Family Conference- Texas
The Cure JM Clinical Care Network is pleased to invite you to join Cure JM families and esteemed doctors from across Texas for a fun and informative event at Dell Children’s Medical Center, Signe Auditorium.
There will be separate fun and supervised activities for kids as well as a teen’s room while parents, grandparents, and other adult family members are learning with the doctors. There will be time to connect with both the doctors and other families, along with a social event to close out the day.
Regional Event
Cure JM Regional Family Conference- New York
Join Cure JM families and esteemed doctors from across New York for a fun and informative event.
There will be separate fun and supervised activities for kids as well as a teen’s room while parents, grandparents, and other adult family members are in educational sessions with the doctors. There will be time to connect with both the doctors and other families, along with a social event to end the day.
We will continue to update the event agenda with up to date information.
Regional Event
Cure JM Family Day at Seattle
Cure JM’s Clinical Care Network is excited to invite you to join other Cure JM families at our Seattle Family Day. Join other families and these esteemed doctors for a fun and informative event: From Seattle Children’s Hospital: Susan Shenoi, MBBS, MS, RhMSUS, Aviya Lanis, MD, Chris Wong, DPT, SCS, CSCS and Alex Carpenter, PT, DPT from the University of Washington: Christian Lood, Ph.D. at Seattle Children’s Sand Point Learning Center, Seattle, WA.
There will be separate fun and supervised activities for kids as well as a teen’s room while parents, grandparents, and other adult family members are in session with the doctors. There will be time to connect with both the doctors and other families and a social event following for those who can stay.
Regional Event
Cure JM Family Day at Duke
Cure JM’s Clinical Care Network is excited to invite you to Cure JM Family Day at Duke. Join other Cure JM families for a fun and informative event with doctors from our Cure JM Clinical Care Network and Center of Excellence.
There will be separate fun and supervised activities for kids as well as a teen’s room while parents, grandparents, and other adult family members are in session with the doctors. There will be time to connect with both the doctors and other families, and a social event will follow for those who can stay.
More to come.
Regional Event
Cure JM Family Day Pittsburgh
More to come.