Newsletter December 2024
Providing relief and support to help children with devastating medically complex, neurological conditions and their families in the St. Louis area and beyond.
Here’s what we’ve been up to…
Community Support
JJMF Holiday Family Event
Our second annual Holiday Family Event was such a festive and joy-filled afternoon for children with complex neurological conditions and their families. Children participated in a variety of holiday-themed activities and parents/caregivers had the opportunity to connect with one another. The event culminated in a heart-warming, holiday-themed music therapy session with our beloved Maria Carron, founder of Midwest Music Therapy.
Advancing our Mission
Year End Reflection
As we turn the page and 2025 begins to unfold, we wanted to take a moment to thank our amazing supporters for making a difference for our courageous community. Your year-end contributions—combined with an incredible matching gift from longtime JJMF supporters Rachel and Jack Oliver—helped us raise $36,450 to power our programs into 2025. These programs help lessen JJMF families’ worries and facilitate connections—providing them with needed resources and more time to focus on loving their children and savoring the moments of joy that fill their everyday lives. If you didn’t see the sweet faces featured in our year-end campaign, we invite you to take a moment to read about Ezra, Maximo, and Faith—three courageous kids in our JJMF community.
Bookmarked
Year in Review
The end of the year is always a fun time to look back at all of the books we have read, reviewed, and shared. This year we had a wonderful variety to choose from and hope you enjoyed some of these great reads, as well. For a full recap, check out the blog post here.
Upcoming Events
Mom’s Valentine’s Day Connection Event with Char’s Sweet Spreads
Sunday, February 2nd
2:00 PM
1 N Brentwood Blvd, Clayton, MO 63105
Moms of children with complex neurological conditions are invited to join us for connection, creativity, and delicious fun as JJMF Youth Board member Charlotte Kittner, owner of Char’s Sweet Spreads, guides you in crafting your own unique Valentine’s Day charcuterie board. This is the perfect opportunity to connect with other moms in the community while learning a fun skill and indulging in festive treats. Don’t miss this chance to relax, recharge, and celebrate love in all its forms!
REGISTER
Valentine’s Day Family Event
Saturday, February 8th
1:00 – 3:00 PM
St. Louis County Library — Meramec Valley Branch
1501 San Simeon Way, Fenton, MO 63026
Love is in the air, and what better way to celebrate the holiday than alongside your fellow JJMF friends and families. We’ll have a variety of Valentine’s Day-themed activities for children with complex neurolgoical conditions as well as their siblings, and parents/caregivers will have an opportunity to connect. Registration is free, but must be made in advance.
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Washington University Medicine’s 3rd Annual Rare Disease Day Symposium with Presentation by Genny Jessee
“Tolerating the Unknown—Finding More Comfort and Peace Despite a Rare, Undiagnosed Disease”
Thursday, February 20th
8:00 AM – 5:00 PM
Eric P. Newman Education Center (EPNEC), Zoom
The Rare Disease Day Symposium at Washington University Medical Center brings together those working on rare diseases to collaborate, share experiences, work through obstacles and discuss the future of rare diseases, and inspire young scientists and clinicians to choose a path in rare diseases. View the agenda for more information. Registration is free, but must be made in advance.
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