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.

The Donut Run is almost here—and we’re praising God for every sponsor, vendor, and sugar-loving soul who’s helping us make impact taste better. October 11th at The Hub in Chesterfield is gonna be sweet, sweaty, and Spirit-filled. Still time to sign up—come run with purpose, cheer with joy, and take part in something bigger than breakfast. 🙌 While there’s too many involved to tag them all, don’t miss all of our incredible friends and companies diving in to help!!

Impact over optics. At Take Part, we promise one thing, our impact will always be greater than our theatrics. We are putting your money where we said we would and we are seeing not just life-changing progress but INDUSTRY changing progress. We sat in a room of the wisest geneticists from all over the country discussing how closing this gap should be the standard of care. They agreed. Until then, we will fight for the dollars needed to make it a reality for every single family we can. No kid should go without the answers they need simply because of a few dollars. Thank you for believing we could do this together - and now? We are after every Children’s hospital IN THE COUNTRY. Let’s go 🔥

Thank you for the shoutout!

The Daily Mix: St. Louis Amateur Hockey Hall of Fame (September 29, 2025) Hockey season is upon us and Angella has the president of the St. Louis Amateur Hockey Hall of Fame in the studio to talk about everything from how it got st...

A morning filled with donuts, movement and fun?!! There’s something for everyone at the Take Part Foundation Donut Run 2025 - October 11th at 🍩💚💪🏻 Come join us for fun and movement as we make RARE known across our city! swipe to checkout our fitness challenges for the day ;)

🍩✨ IT’S OFFICIAL: Donut Run 2025 registration is NOW OPEN! ✨🍩
Lace up your sneakers, grab your crew, and get ready to run (or walk, or dance) for a cause that’s as sweet as it is strong.

🎉 Retro vibes. Local donuts. Live DJ. Face paint.
💪 Every step supports kids with rare diseases.
📅 Mark your calendar: October 11th
📍 Location: The Hub STL
🔗 Sign up now: DonutRun.GiveSmart.com

Whether you're in it for the donuts, the impact, or the unforgettable energy—this is your moment to Take Part. Let’s make rare seen. 💜

🍩 Ready to Rally Your Crew?
The Donut Run 2025 is rolling in on October 11th at The Hub in Chesterfield—and we’re calling on gym owners, local leaders, families, and friend groups to step up and lead a team.

Whether you’re in it for the competitive energy or the donut stops (no judgment), this is your chance to run for a purpose—helping kids with rare diseases thrive through the Take Part Foundation’s work in research, resources, and storytelling.

📣 Why lead a team?
- It’s a chance to gather your crew for something that matters!
- You’ll help raise awareness and funds to help rare kids thrive through research, resources, and storytelling
- You get first dibs on shout-outs and being awesome ;) It’s really nothing formal but EVERYTHING fun!

Start a team. Name it. Own it. Let’s make rare seen.

👉 Message me or drop a comment and I’ll get you set up with next steps this week before public signups start next Monday!