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…

Month of June | Cultivating Community
All month long we celebrated June’s legacy by cultivating care and community with care packages and in-person and virtual events for families and bereaved parents of children with medically complex, neurological conditions. If you participated in any Month of June activity or received a care package, we’d love your feedback. Click here for survey.

Fundraising Spotlight | Grant Updates
The JJMF received two generous grants that will help us continue our mission. Thank you to St. Martha Giving Circle and The Service Bureau Foundation for their philanthropic support. Learn more about how you can help the JJMF.

Bookmarked
Featured in our Month of June Care Packages, The Carrot Seed (Krauss, R., 1945) reminds us how important it is to keep believing because sometimes you might not see the progress in the way you want or expect, but there is still important growth happening underneath the surface.

On the Blog
Read Genny’s reflection on the importance of June’s ‘teaching’ legacy through the JJMF-sponsored lectureship and the synopsis of Dr. Bob Macauley’s Pediatric Grand Rounds presentation on the 10 things physicians should avoid when caring for a patient with a severe neurological disorder.

Conference Spotlight | The Bow Foundation
Genny had the honor of speaking about caregiver wellness and overwhelm at the GNAO1 Medical Community & Family Conference in St. Louis, hosted by The Bow Foundation. GNAO1 is a gene mutation with only 200 known patients worldwide. Learn more.

Lectureship | Pediatric Palliative Care
JJMF hosted Dr. Bob Macauley for its 2022 Lectureship in partnership with St. Louis Children’s Hospital and Washington University School of Medicine. Watch Dr. Macauley’s Pediatric Grand Rounds lecture on “The Not-Top-10 List of Caring for Children with Serious Neurological Impairment.”

Events
Our community enjoyed several Month of June events. In addition to Virtual Music Therapy and Yoga On Demand, parents and caregivers met for a night out at Katie’s Pizza Town & Country, and families attended an in-person Music Therapy session at Drace Park Pavilion. Sign up for Virtual Music Therapy and Virtual Yoga in July. Registation is free.