Grandparent Council (GPC) Meeting Recap • May 25, 2023

Meeting notes are posted on the Grandparent Council Bookshelf.

Next Meeting: Date June 22 2023 at 3 pm EDT/2 pm CDT/1 pm MDT/12 pm PDT

The March Grandparents Council (GPC) meeting was held on May 25, 2023, at 3 pm EDT. These meeting notes will be posted in the Grandparent Council Bookshelf on google docs, along with previous meeting notes: Recent GPC Mtg Notes


Exercise and Myositis (Laura Tasan) Educational Video Presentation and Discussion

Cure JM Family Conference

  • The family conference will be held 29 June – 2 July 2023 in Gaithersburg, MD. Grandparents of a JM child are welcome to attend even if the parents are not able to attend.
  • Currently, there are 15 grandparents registered. There is still time to register at 
  • Scheduled activities for grandparents:
    • Social gathering on Friday morning at 10 am, 30 June, followed by a welcome lunch with guest speaker Dr Lauren Pachman followed by a Q & A session.
    • Roundtable discussion after lunch on Friday afternoon.  
      • Grandparents are free to submit discussion topics to Randy or Betsy.
    • The full Family Conference schedule can be found on the following link event agendaLots of sessions will be available to learn from.
  • There are supervised activities for JM kids of all ages and their siblings. 
  • The Walk Strong event is Sunday morning, 1 July.

Future Topics for Grandparent Council Meetings

  • Our upcoming June meeting topic is sun protection for JM patients
    • This follows:
  • The following topics to be presented at future Grandparent Council Meetings in order of preference:
    • Top 2 topics:
      • School Accommodations (1 video & 2 articles)
      • Mental Health (2 videos & 6 articles)
    • Followed by:
      • Transitioning from Pediatric to Adult Care (2 videos & 4 articles)
      • Autoantibodies in JM (2 videos) Best Practices for Newly Diagnosed Patients (4 videos & 8 articles)
      • Fundraising brainstorming session 
      • 2nd Opinions (1 video)
      • Treatments & Side Effects (2 videos & 1 article)
      • IVIG (1 video & 1 article)
      • Brainstorming session on how to educate more Doctors, especially Pediatricians, about JM

Additional Links of Interest

Join the Grandparent Council Call on June 22nd. Register here. 

“Ask the Doc” – Sun Protection Tricks & Tips for Summer 2023

With summer underway, we are honored to share our latest “Ask the Doc” Town Hall on Sun Protection Tips and Tricks for Summer. In this session, Shelia Angeles-Han, MD, MSc, and Kalyani Marathe, MD, MPH of Cincinnati Children’s Hospital, share the importance of sun protection for JM patients.

Sun Protection Tips & Tricks: What Parents, Grandparents, and Patients Need to Know

Ask The Doc: Why Exercise and Nutrition Are Important In JM

We are honored to share this insightful presentation and Q&A on the importance of exercise and nutrition in treating juvenile myositis with Dr. Brian Feldman of The Hospital for Sick Children and the Cure JM Clinical Care Network.

What role does exercise and nutrition play in JM treatment? When should JM patients be cleared for exercise? What effects do exercise and nutrition have on disease outcomes?

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.