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: Why Exercise and Nutrition Are Important In JM
- The Importance of Exercise in Juvenile Myositis
- 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
- 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
- Top 2 topics:
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
