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…

Impact
JJMF Sponsored Pediatric Grand Rounds Lecture
Each year, the JJMF hosts a lecture at St. Louis Children’s Hospital’s Pediatric Grand Rounds, inviting a guest speaker to share important perspectives centered on caring for children with complex neurological conditions. This year, we were honored to have Dr. Jori Bogetz, from Seattle Children’s Hospital, present on the topic of “Improving care for children with severe neurological impairment and their families.” Stay tuned for a blog post to learn more details about the positive impact of this year’s lectureship.

Community Support
Building Awareness
If amusement parks are on your family’s summer bucket list, check out our March Blog Post where we highlight some great accessible amusement park destinations.

Neuro Knowledge
This new 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 neuroplasticity?

Neuroplasticity, the brain’s ability to adapt and form new connections, plays a crucial role in both recovery from and the development of complex neurologic disorders. Understanding this process is vital for developing effective and timely therapies and treatments.

Oftentimes complex neurological disorders and neurodevelopmental conditions—such as epilepsy, cerebral palsy, and Fragile X syndrome—are associated with disruptions in neuroplasticity or impaired ability to adapt and learn. When it comes to recovery development, neuroplasticity is critical—here’s why:

When a child has a brain injury or a neurological disorder, other areas of the brain can sometimes take over functions that were lost or impaired—compensating for the damaged area(s).

Interventions like physical, occupational, and speech therapy rely on neuroplasticity to help children build new neural connections. The earlier and more consistently therapies are applied, the greater the potential for progress.

The potential for the brain to form new connections and adapt can even help improve motor skills, speech, and cognitive abilities over time. Further, neuroplasticity enables children to learn how to use tools like prosthetics, communication devices, or mobility aids more effectively by rewiring neural pathways to incorporate these supports.

If you’d like to learn more about neuroplasticity and why it’s so important to understand when it comes to children with complex neurological conditions, read more from our recent post.

Rare Disease Day Skate Under the Stars
In honor of Rare Disease Day, we recently had the opportunity to support both United for Rare and the Take Part Foundation at their Skate Under The Stars event. This annual fun-filled, family event is a wonderful chance for all families—rare or not—to gather in support of rare disease research and genetic testing at St Louis Children’s Hospital. It was an honor to include some JJMF love in attendees’ gift bags and help support rare disease research—a cause that is near and dear to the JJMF community’s heart.

JJMF Team Spotlight
Welcome Susan and Lauren!

Meet JJMF’s new Community Engagement Associate: Susan Leigh
Susan is a Licensed Clinical Social Worker with extensive experience supporting children and families in the St. Louis area. She is especially passionate about serving families of medically complex children, a commitment that is both professional and deeply personal. As the mother of Rowan, a beautiful boy who benefited from the June Jessee Memorial Foundation, Susan has witnessed firsthand the profound impact of its work. She is eager to give back to families in the same meaningful way her own family was supported.

Fun Fact: Susan loves baking and decorating homemade cookie cakes for her friends, family and neighbors. She is most excited to bake these cakes for her kids and any one of her 12 nieces and nephews on their birthday.

Learn more about Susan in our recent announcement!

Meet JJMF’s new Programs and Events Coordinator: Lauren Breen
Lauren is a pediatric physical therapist with a special interest in children with neurological and genetic disorders. She sees children with a wide variety of diagnoses and medical complexities and is committed to making strong connections with families to ensure they feel empowered and supported. Lauren is also a parent to a child with a rare epilepsy and is passionate about connecting and supporting families like hers.

Fun Fact: Lauren enjoys baking and making sourdough breads and tasty treats! She is always looking for new sourdough recipes to add into her rotation!

Learn more about Lauren in our welcome post!

Volunteer Spotlight
Meet Katie!
This month we wanted to give a special shout-out to JJMF Youth Board Member Katie Williams, who recently received the Archbishop May Service Award from her school! This annual award from the Office of Catholic Education and Formation of the Archdiocese of St. Louis is presented to a senior from each of the 26 Catholic high schools in the archdiocese, recognizing outstanding leadership, community service, and volunteer achievement.

We are lucky to see firsthand how Katie embodies each of these values through her work on the JJMF Youth Board, making a valuable impact for children with complex neurological conditions and their families. Her warmhearted spirit shines at our events as she connects with the community.

Thank you, Katie, for all you do to support our mission!