Tbc1d24 Foundation

11/27/2024

🍂 Happy Thanksgiving! 🍂

As we gather with loved ones, let's take a moment to reflect on the many blessings in our lives. This Thanksgiving, we are grateful for the warmth of family, the support of friends, and the opportunities to grow and learn.

Let's also remember and honor the diverse histories and cultures that make our communities vibrant. Thanksgiving is a time to appreciate the land we live on and acknowledge the Indigenous peoples who have stewarded it for generations.

Wishing everyone a day filled with gratitude, kindness, and delicious food. 🦃🍁

10/21/2024

💜💜 we love our Sammy 💜💜

In this tender episode, we speak with Sammy's loving mom, who shares beautiful memories of her son. Despite living with a rare gene mutation that caused untr...

08/25/2024

We did it - our small TBC1D24 community, with both donated and matched funds, has a research grant available for just over $60,000!

If you're interested in submitted an LOI, please do so here by the September 20th deadline! http://bit.ly/MDBR2024RFA

06/08/2024

Today’s the day! Help us cheer on our rare riders 🚴🚴

There’s still time to donate to help us reach our goal! https://charity.pledgeit.org/t/OHzsTEONbl

06/05/2024

‼ to our in-person riders and anyone joining us on Sunday in Philly ‼

See below from our team leader and find us that morning to get your team shirts before our team photo 📸

Send a message to learn more

06/05/2024

🚴‍♂️We're just 3 days away! 🚴‍♂️ We still have some ways to go before reaching our 💸$30k💸 goal with all donations matched and 100% going to research🧬so

Please head over to our page 👇and donate and 📣share📣 with all your friends!
https://charity.pledgeit.org/t/OHzsTEONbl

05/08/2024

We're one month away from the 🚴‍♀️🚴 The Million Dollar Bike Ride for Orphan Disease Research ‼

Help us reach our fundraising goal for much needed research 🧬all contributions are doubled up to $30k! This is an amazing opportunity for our !

Link here 👉👉 https://charity.pledgeit.org/t/OHzsTEONbl

04/25/2024

The Million Dollar Bike Ride is our largest fundraiser as the money we raise is matched up to $30k - this is HUGE for our small, rare gene mutation 🧬 and pivitol in getting us the attention and funds we need for research.

If you haven't signed up to ride or donated yet - please do here 👇👇
https://charity.pledgeit.org/t/OHzsTEONbl

And share with all your family and friends 😉

04/09/2024

Organized by one of our amazing mamas 💜💜

04/05/2024

Anyone else find it incredible that the CDC is using data points that are more than 10 years old ⁉️

04/04/2024

Watching your child have seizures that nothing seems to stop is horrifying and heart breaking💔

So we get excited when people try to find ways to support drug resistant epilepsy! Thank you to the Pediatric Epilepsy Research Consortium for sharing 💜

Link to study👉https://onlinelibrary.wiley.com/share/HQ4UQKAAH2W8E6DKMINB?target=10.1002/epi4.12902

"We surveyed 32 pediatric epilepsy centers in USA to highlight current practices of intracranial neuromodulation. Of the 17 that replied, we found that most centers are implanting thalamic targets in pediatric drug-resistant epilepsy using the RNS device. DBS device is starting to be used in pediatric epilepsy, especially after 2020. Different strategies for target identification are enumerated. This study serves as a starting point for future collaborative research"