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. 

Affordable and Accessible Treatments for JM

Affordable and Accessible Treatments for JM

Two special guest speakers, Michelle Vogel, MPA, IV Solutions RX, and Laurel Cherwin, BSN, RN, IgCN, Octapharma, shared information on navigating affordable treatments and care for JM patients.

The FDA’s Ruling on Vamorolone in DMD

You may have heard about yesterday’s FDA ruling, which approved vamorolone as an alternative steroid for use in Duchenne muscular dystrophy.

Vamorolone is a new steroid alternative with fewer side effects than prednisone. The drug aims to preserve the beneficial anti-inflammatory and muscle-strengthening characteristics of corticosteroids, while decreasing some of the unwelcome side effects, including bone fragility, delayed growth, and behavior changes.

As we learned in yesterday’s announcement, vamorolone was found to be both safe and effective as a therapy for Duchenne muscular dystrophy in its newly approved indication.

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!