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…

Paying It Forward
THANK YOU to the Howard family for spreading awareness of JJMF. Their grassroots fundraiser in honor of their daughter Sutton raised $1,850 on Rare Disease Day. As JJMF grant recipients, they are paying it forward so that we can help more families like them find relief, without the red tape. Donate.

Resource Spotlight | Feeding Tubes
The Feeding Tube Awareness Foundation estimates that approximately 20% of children under the age of 18 are tube fed, and there are more than 350 conditions that can require children to need nutritional support through tube feeding. We’re thankful for this little medical device that can help children live, grow, and thrive.

Bookmarked
The Year of Magical Thinking (Didion, J., 2005) This book is Didion’s account of the year following the death of her husband while also caring for their daughter who is suffering from a severe illness. A great read for anyone navigating grief and the feelings of betrayal and guilt that can arise when letting a loved one go.

On the Blog
Our latest ‘Sorry To Meet You This Way’ guest blogger is JJMF grant recipient Samantha Nuckols. You might remember her from An Evening of JOY. Sam’s daughter, Sadie Paige was born at just 25 weeks and was diagnosed with multiple medical complexities. Read the family’s inspiring story and how they found connection, relief, and joy through the JJMF and its community.

Community Connections
February was chock full of snow days and virtual community events! The community gathered on zoom for a Valentine-themed Music Therapy session, Restorative Yoga, Self-Love Workbook Workshop and Coffee Talk. Sign up for March events here. 

Staff Spotlight
Growing our team is a vital step towards reaching really big goals for the JJMF and our community. We are proud to welcome Allison Reichart, Director of Development and Operations. Allison is no stranger to the JJMF and helping the organization fulfill its important mission is a passion for her. Fun Fact: Allison is expecting her third child any day now!

Did you know?
70% of genetic rare diseases start in childhood. Genny and Genetic Counselor, Erin Beaver sat down to discuss the many hats Erin wears when working with families. Listen to their in-depth discussion on topics including genetic testing and family planning, genetic testing to help determine treatment, metabolic conditions, and much more.