Meeting notes are posted on the Grandparent Council Bookshelf.
The February Grandparents Council (GPC) meeting was held on February 23, 2023. These and previous meeting notes are posted on the Grandparent Council Bookshelf on google docs: Recent GPC meeting notes.
Thank you all for participating in our meeting. The group had a great discussion about transitioning from pediatric to adult care. Please review the information here for resources and support.
Grandparent Annual Survey
Grandparents’ opinions are highly valued. Please give us your feedback and complete this brief survey.
The Grandparent Calling Tree
- The calling tree is a list of grandparents, currently 5, willing to make themselves available to share one-on-one support with grandparents. Access the Grandparent Calling Tree.
- Grandparents who are interested in joining the calling tree should contact Randy Putt.
- Grandparents participating in the calling tree plan to reach out to grandparents not attending these calls to offer support, especially grandparents with recently diagnosed grandchildren.
Cure JM’s Family Conference Update • June 29–July 2, 2023
The family conference includes supervised activities for JM kids of all ages and siblings. The Walk Strong event is Sunday, July 2, 2023.
- Registration is now open, and grandparents were encouraged to register by March 15 to receive the “Early Bird Discount.” To register, please visit www.curejm.org/conference. The Early Bird Discount ends on March 15.
- There are plans for a social gathering for grandparents on Friday, June 30, at 10:00 a.m., followed by a welcome lunch and Q&A session with guest speaker Dr. Lauren Pachman.
- A grandparent roundtable is being planned after lunch on Friday, June 30. Grandparents are encouraged to submit discussion topics to Randy or Betsy.
- Friday afternoon after the mid-afternoon break and again on Saturday afternoon, grandparents can attend one of many sessions offered during each period. The Family Conference Event schedule can be found here.
- Supervised activities for JM kids of all ages and their siblings are offered throughout the conference.
- The Walk Strong event is on the morning of Sunday, July 1.
Rare Disease Day • February 28, 2023
- The “I ❤️ Someone Rare” campaign is underway. To date, $4,560 has been raised with a goal of $25,000 with your support. Please donate here.
- Cure JM invites you to sign and share our Proclamation About Rare Disease Day to be sent to Congress to raise awareness. This proclamation can be found in the February Family Newsletter; please sign and share!
Discussion Topics for Future Meetings
- Invite a young adult to share their story.
- Discuss steps for the transition from pediatric care to adult care. Please browse through the following links for more guidance on transitioning from Pediatric to Adult Care:
- Watch this video presented by Dr. Rebecca Sadun and Dr. Rodolfo Curiel reviewing strategies for pediatric to adult care transition.
- Read this article recapping Dr. Rebecca Sadun’s presentation on transitioning from pediatric to adult care. Some tools referenced in this artcile are listed below.
- Please feel free to contact Randy with any other topics of interest.
- A special thank you Kim Carlson for sharing her story about her granddaughter, Emma. Read her story here.
Join the next Grandparent Council Call next month on Thursday, March 23, 2023. Register here. Please review previous meeting topics, information, and notes here.
