Grandparent Council (GPC) Meeting Recap • December 15, 2022

Meeting notes are posted in the Grandparent Council Bookshelf.

The December Grandparents Council (GPC) meeting was held on December 15, 2022. These meeting notes, along with previous meeting notes, are posted in the Grandparent Council Bookshelf on google docs: Recent GPC meeting notes.

Introductions

Thank you all for joining our meeting as we gear up for holiday celebrations with our loved ones. We had excellent attendance this month with 17 grandparents, one parent, and two staff members. Each grandparent/parent was asked to share a memorable story about their JM grandchild or child. The stories from all the grandparents exhibit how special JM kids truly are.  

  • Many older kids have excelled in academics, the arts, and athletics.
  • Several stories shared were humorous since the JM patient used humor to help them cope with their JM treatments.
  • As kids get older, they become more private about their diagnosis and focus more on what other things they can do
  • As suggested by several grandparents, these achievements helped these kids overcome the burden of JM treatments.
  • The stories about the older JM kids provide hope and inspiration to the grandparents of younger JM patients.
  • A parent shared a story about his 34-year-old daughter, who has been a patient for more than 30 years. Despite JM, she leads a productive and fulfilling life.

There is hope for their grandchild to live a fulfilling and productive life.

 A Giving Tuesday Update and How You Can Help

Shannon shared how grandparents have been a driving and determined force of support that has made so many things possible. With so many wonderful supporters, we hope to reach our stretch goal of $1 Million. Cure JM has made extraordinary progress in making expert care available to more patients. Fifteen years ago, there was only one Center of Excellence, and today there are five centers of excellence & 15 institutions in the Clinical Care Network. With your continued support, we can grow our resources to advance our mission of better treatments and improved care. Help us reach our goal and unlock a matching gift from Cure JM Founders’ Over the Top Challenge.

Ways you can help us reach our goal:

  • Share a letter with family and friends about your fundraiser.
  • Share a quick social media post, text, or email.
  • Talk to a friend or someone you know about your story.
  • Share a general message with the link www.curejm.org/give.

Follow our progress toward the goal at www.curejm.org/give. Please contact Betsy at 858.220.0039 or betsy.leon@curejm.org if you have any questions or want support on how to share.

The Grandparent Calling Tree

The calling tree is a list of grandparents willing to make themselves available to share their stories and experience with any other grandparent. We encourage grandparents to use this to connect with other grandparents and receive support. Access the Grandparent Calling Tree.

Cure JM Family Conference June 29-July 2, 2023

Updated information will be shared in January 2023. Click here for current information.

The following sessions are being planned specifically for grandparents:

  • Welcome lunch with a guest speaker to be determined
  • Roundtable discussion 
  • 1 or 2 additional sessions for grandparents.

We ask grandparents to please submit suggestions for additional topics.

There will be parent sessions of interest for grandparents, as well.

Myositis Specific Antibodies (MSA’s)

  • Quick Fact: It is a blood test that takes about six months to get the results, and it is useful for planning treatment for newly diagnosed kids.
  • Watch this informational about MSA’s video here
  • You can request this test by asking your doctor or viewing the Center of Excellence (link: https://www.curejm.org/centers-of-excellence/) or Clinical Care Network to contact our recommended doctors.

Transition from Pediatric to Adult Care

Happy holidays and see you in the new year!

Join the Grandparent Council Call next month. Register here. Please review previous meeting topics, information, and notes here

Chapter Facebook Groups

Connect locally! Join one of our Cure JM Chapter Facebook Groups and meet other Cure JM Families at an upcoming event in your area. Connecting

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.