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…

Give STL Day
Give STL Day kicked off in April, and we’re raising funds for our financial assistance program to support families in paying for out-of-pocket medical needs that are not covered or only partially covered by insurance. On April 29th, June’s birthday, many donors contributed to the campaign to support this vital program in her honor. It’s not too late to make your donation to help families grow stronger – give online now through Give STL Day on May 10th!

Meet the Woods Family!
Meet the Woods family! Diagnosed with a rare genetic condition at six weeks old, Landon has epilepsy, infantile spasms, cortical visual impairment (CVI), developmental delays and low muscle tone. As you can see, his smile can instantly melt your heart. Click here to read more about his Mom and how she’s gotten involved in the JJMF community!

On the Blog
As a follow up to National Siblings Day, we heard from several JJMF families about the relationships between their medically complex child(ren) and their sibling(s). Read more about their stories here.

Bookmarked
Let’s Go Play: A Children’s Book About Adaptive Equipment and Inclusion by Shelby McCarthy is not only educational, but it’s an adorable way to introduce children to different types of disabilities and the various adaptive equipment that they might see at an age-appropriate level. It’s a favorite in our household, and we’ve also gifted several copies to close friends to share with their children. There is even a matching coloring book you can order as well! ~ Karlita Blackwell, JJMF Community Engagement Associate

Community Support
Run for Sight
JJMF was honored to host a tent at Delta Gamma Center’s annual Run for Sight event at Forest Park in St. Louis. We were able to connect with several families and share the important ways JJMF is supporting the community. Click here to learn more about Run for Sight.

Building Awareness
Table Tops
JJMF founders and June’s parents, Matt and Genny Jessee, were honored to be the patient family speakers at this year’s St. Louis Children’s Hospital Tabletops luncheon. This event supports the hospital’s Wings pediatric home care program and the Pediatric Advanced Care Team (PACT), from which June and her family benefitted. To view the impactful video sharing June’s story and how the Wing’s pediatric home care program supported them during a vulnerable time, click here.

Washington University
Genny was invited to speak at an interprofessional course on hospice and palliative medicine at Washington University. Furthering our mission to improve care by educating healthcare professionals, she shared with this group of future nurses, social workers, and doctors about June, what it is like caring for a medically complex child, and the importance of palliative care for this patient population. This important discussion will help improve the ways in which healthcare professionals assist families in navigating a complex care system.