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

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 www.curejm.org/conference. 
  • 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. 

Balancing Work and Caregiving: Strategies for Working Parents of Children with Juvenile Myositis

Balancing the demands of a career with the responsibilities of caregiving is a challenging task for any parent. For those with a child diagnosed with juvenile myositis (JM), a rare autoimmune disease affecting children, the challenge is heightened. Juggling work commitments while providing the necessary care and support for a child with JM can be taxing. In this article, we hope to provide you with a few effective strategies and insights to help working parents navigate this delicate balance.

May 2024 Symposium

The Spring Cure JM Medical Symposium in partnership with Duke University happened May 23rd, 2024, virtually, with presentations from world-leading researchers and clinicians on advancements in basic research, translational studies, and best practice clinical care in juvenile dermatomyositis.

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.

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