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
Valentine’s Day Family Event

Last month, the JJMF Youth Board hosted a festive gathering for children with complex neurological conditions and their families. After participating in a variety of Valentine’s Day-themed activities, little ones left with their very own decorated Valentine’s Day box full of goodies—while parents and caregivers had the opportunity to connect with one another. Thanks to our creative and dedicated Youth Board, love was certainly in the air at this first ever JJMF Valentine’s Day Family Event!

Impact
Meet Vincent

Meet Vincent — a sweet, music-loving 4 year old boy whose family is part of our beloved JJMF community. Vincent loves singing, being silly, and going for walks. Like many of our community families, Vincent enjoys attending JJMF’s virtual music therapy sessions, led by a specially trained neurological music therapist who hosts an interactive session full of singing, dancing, and instrument playing.

Beyond just plain having fun—which is important in its own right—some additional benefits of music therapy include: building connections in the brain and stimulating cognitive function, promoting relaxation and reducing muscle tension, building social and communication skills, and providing an outlet to express emotions.

Vincent’s mom recently shared her gratitude for this program, “We’ve really appreciated Music Therapy – Vincent has so much fun and it’s a nice time to relax and a moment to bond and connect with each other and other kids and families.”

Building Awareness
Neuro Knowledge 

This new monthly social media series aims to demystify a complex topic, share information, and increase widespread awareness and understanding—as it relates to serving our courageous community of children with complex neurological conditions and their families.

This month: What is a seizure?

A seizure is a burst of uncontrolled electrical activity between brain cells that may result in a variety of different symptoms. This can include rhythmic shaking of all extremities—like a classically described “Grand Mal” seizure—or may be much more subtle with twitching of an extremity, limpness or stiffness, or just decreased responsiveness and staring.

Seizures are not all alike. In fact, there are over 30 different types of seizures. A seizure can be a single acute event caused by something such as medication, or recurring—which is known as epilepsy. Some people may experience more than one type of seizure. The specific type of seizure a person has can be determined by a doctor based on their symptoms, medical history, and an EEG (electroencephalogram) test.

If you’d like to know what to do if you think someone around you is having a seizure, read more from our recent post.

Rare Disease Day Symposium

In honor of Rare Disease Day, the JJMF team attended Washington University’s annual Rare Disease Symposium on February 20. Our co-founder and Executive Director, Genny Jessee, was a keynote speaker at the event and shared seven suggestions that have helped her and others when trying to find peace with the unknown. Genny’s presentation, titled “Tolerating the Unknown: Finding More Comfort and Peace Despite a Rare, Undiagnosed Disease” highlighted her 7 tips for parents, caregivers and families facing unknown or rare diagnoses.

Benefits of Music Therapy

Not only is music therapy fun, but there are a variety of other impressive benefits associated with it! According to the Brain Injury Association of America, music therapy has been shown to facilitate neuroplasticity, in turn, improving quality of life and overall functioning. If you’re curious to learn more about some of the other benefits of music therapy, check out our recent post!

Board Member Spotlight
Meet Tasha!

Meet JJMF’s Newest Board Member: Tasha Borglum

Tasha first became involved with JJMF as a member of our parent community. Since her youngest of two sons has a rare neurological condition, she understands firsthand the challenges parents face when caring for a child with medical complexities. As Tasha shared, “I have a different kind of empathy for impacted families that I could not have had without my family’s experiences. I want to do something valuable with that empathy and experience to help others in unique circumstances.”

In 2024, Tasha served on the event committee for An Evening of Joy, our annual fundraiser. Her involvement and support as a committee member helped the event grow to its most successful results yet. As a result of her dedication to the JJMF mission, Tasha was nominated to the Board of Directors and elected for a term beginning in 2025. We’re incredibly grateful for Tasha’s involvement and support. Read more about her impressive background and what she hopes to accomplish through her work as a Board member in our recent post.