Take Part Foundation

A genetic diagnosis is the foundation of effective care. Without it, families are left navigating symptoms without direction. With it, everything changes...treatment plans become clearer, insurance is more likely to approve next steps, families find support through connection with other families, and children gain access to the resources they need to thrive.

Take Part Foundation has funded 40 completed genetic tests, with dozes more approved...and many more to come. Of these...

* 5 children (12.5%) received informative genetic testing results

* 1 child had negative diagnostic results

* 34 children (85%) had a diagnostic finding that could contribute to a change in medical care with actionable steps

St. Louis Children’s Hospital described these outcomes as “magnificent.”

These diagnoses are not just labels. They are the starting point for targeted care, early interventions, and long-term stability for families.

Referrals for genetic testing are increasing rapidly.
To avoid exhausting available funds, the hospital has shared that they must be more selective in approvals over the next few months.

This means:
+ More families are being denied by insurance
+ More children are waiting
+ And without donor support, many will go without answers entirely

Your continued generosity ensures that no child is left behind simply because of an insurance denial.

Thank you for standing with these families.

Your generosity is giving children the most powerful tool in rare disease care: a diagnosis.

You are opening the door to treatment, coverage, and hope, and giving parents the peace of knowing they are not alone!

Because of you, children in St. Louis facing rare or undiagnosed conditions are finally getting the answers they need to thrive. Our hope is to continue this impact with your continued generosity, right here in St. Louis and beyond.

If you see something in someone, say something. And I see the servant heart in these two dear friends of mine. So many of us in our area have been on the receiving end of the gifts these two so freely share with the world, expecting NOTHING in return. Truly. As a friend, as a community leader, these two encourage me and serve without hesitation. And I know it’s not just to me - it’s to many of you too. And while capturing the moment is what many see, it’s the glory to God behind it that leaves a mark on all of us.

Drop some love for everyone’s favorite community cheerleaders and .northern416 below.

Our first ever SOLD OUT Skate Under the Stars event is happening this coming Tuesday, thanks to so many of our dear friends and incredible businesses who value the lives of kids battling rare diseases! You can still make a donation at SUTS.givesmart.com and stay tuned for more information on events coming this year for more opportunities to celebrate these incredible kids with us! 💚

This is a meaningful moment for families living with rare and neuromuscular diseases.

Congress has released the FY2026 Appropriations Bill, and it includes several long‑awaited wins for our community.

✔️ Increased NIH funding to strengthen neuromuscular research
✔️ Faster access to out‑of‑state specialists through the Accelerating Kids’ Access to Care Act
✔️ Reauthorization of the rare pediatric disease priority review voucher program
✔️ Continued funding for ALS, FSHD, SMA, and Duchenne research
✔️ Stability for CDC + HRSA programs that support newborn screening and family care

For families navigating complex medical needs, these aren’t abstract policy changes — they’re pathways to earlier answers, better treatments, and more possibilities.

A vote is coming soon. Now is the time to raise our voices.

Join us in urging Congress to support this bill. Together, we Take Part!!

Big news for rare + neuromuscular families.
The FY2026 Appropriations Bill includes major wins that strengthen research, access to care, and support for medically complex kids.

From faster Medicaid approvals to stronger NIH funding and renewed incentives for rare‑disease treatments, this could be real progress.

A vote is coming soon.
Your voice matters.
Let’s keep pushing for better care, better access, and better futures.

Take Part with us.