Sammy-Strong

04/21/2026

02/27/2026

🦘🦓💜

“TBC1D24 disorder is so rare that it felt like we were the only ones living with it.”
For JoeyLynn Nolan, finding a diagnosis didn’t just name her son’s condition, it opened the door to connection, understanding, and hope.
In her Rare Disease Month reflection, she shares how connecting with another family changed everything, and why answers matter for families navigating the unknown.
Read how diagnosis, community, and Baby Joey’s legacy continue to make an impact: https://hubs.ly/Q044sWsH0

01/29/2026

☀️
Ended up at the cemetery today.
Been too long.
Someone came and put cars. Don’t know who. Wasn’t me. Wasn’t Sam. I’m glad they did.

I picture kids playing with the cars here. Like they’re playing with him.

Sure love that we have people taking care of our boy when we can’t make it out here.
☀️

04/03/2025

5 years Without you feels like way too long bubby. 💙

03/27/2025

As we enter the Perez family hell week, we want to remind you all to stay

03/01/2025

In honor of rare disease day, here is Sammy, 4 weeks old, with his first ever twitchy fingers. Lasted for 20 minutes.
This was the catalyst that got us sent to the neurologist,
then to the genetic testing,
and then finally to the diagnosis (at 9 months).

When he was diagnosed in 2019, he was one of 100 known cases. 100.

12/21/2024

Happy 6th Birthday Baby Boy!
💜

10/20/2024

Had an incredible opportunity to talk about Sammy on the Lost Child podcast.

💙

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...

08/26/2024

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

08/06/2024

Another milestone without you bubby.

Will they all feel this way?

Is it because I’m teaching your age group?
With all their birthdates around yours?
The type of class you likely would have been in?

No first day of kindergarten for this sweet boy. 💔

Momma misses you, Sammy-Boy. 💙