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

• For grandparents not able to attend this meeting the video can be viewed at https://www.youtube.com/watch?v=_n9xfH8bb-I&feature=emb_imp_woyt
• Exercise is important for JM patients. Since there can be some muscle pain for JM patients when exercising, some patients are reluctant to exercise.
  • Any activity that gets the patient moving is good.  
  • Find activities the patient likes to do.  
  • Swimming is a less painful exercise for patients.
• Bone breaks can occur in JM patients. Not typically caused by JM. More likely due to prednisone use depending on dosing and length of time used.
• There are additional videos available on the Cure JM website, including Dr. Feldman’s presentation of 18 May 2023.
  • Ask The Doc: Por qué el ejercicio y la nutrición son importantes en JM
  • La importancia del ejercicio en la miositis juvenil
  • Nutrition & Exercise
  • Strech Out! – Children’s National Medical Center
  • Go to curejm.org, then click on Get Support at the top of the page, then type in Exercise in the search box for a list of additional exercise information.

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 agenda. Lots 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:
    • 2 June Town Hall Topic – Dr Sheila Angles-Han “Sun Protection Tips & Tricks”
    • Register at  www.curejm.org/town-halls
• 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

• Access the Grandparent Peer Support Network
• 9 Ways Grandparents can Support their Family After Diagnosis 
• Ways Grandparent Can Get Involved
• Recent Meeting Outcomes – Google Docs

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