Raiv the Brave

10/15/2026

Attention awesome Trichothiodystrophy and Cockayne Syndrome dads! Join Trey Allen tonight for the monthly virtual dad’s group! New dads, old dads, step dads, bereaved dads, and all other types of dads in between are welcome! ❤️

https://us06web.zoom.us/j/88597658079?pwd=UCVDozdOnrw7U7Wj2igtijfnbmJfuv.1

Meeting ID: 885 9765 8079
Passcode: 775137

Zoom is the leader in modern enterprise cloud communications.

10/03/2026

Mark your calendars for the monthly dad’s meeting! Trey had a great turnout last month! Let’s keep it going!

09/27/2026

There’s just something so special about these Miracle League basbeball games. Everyone is just there to have fun, play some baseball, play in the dirt, and dance a little of the cha cha slide. It’s really such a blast! Thank you to my sister and Marty for playing outfield so the players could have more turns hitting the ball! And of course thank you to Skyler for being Raiv’s special helper! ⚾️🧢

09/26/2026

Looking his best for picture day! Also had his annual hip X-ray, and his hips still look fine! Only change noted is GROWTH! 😍 Trichothiodystrophy (especially the ERCC2 variation Raiv has) is likely to cause hip deterioration eventually, so they like to keep a close eye on that. All good for now!

09/10/2026

TTD/CS Dads!! Don’t forget tonight is the monthly virtual Dad’s meeting! Link to the zoom meeting below:

https://us06web.zoom.us/j/84278775740?pwd=m3CNb4kmxizMzDdeZwxHeLpFwb2QZR.1

Meeting ID: 842 7877 5740
Passcode: 377659

09/09/2026

The things we do in the name of rare disease research… 😆💩Shoutout to the University of Minnesota for doing important work for our kids though!

08/13/2026

Dad’s virtual meeting tonight for all TTD/CS dads!

💛 **Calling all Share & Care dads — we hope you'll join us Thursday night!**

We’re excited about a new community growing within Share & Care — **created by dads, for dads.**

A special thank you to **Trey Allen, dad to our own “Raiv the Brave,”** for taking the initiative to bring our dads together and get this started. A couple of our other Share & Care dads have also stepped up to help Trey build a place where dads can connect, support one another, and most importantly, **be real.**

Being a dad on this rare-disease journey takes incredible strength. But strength can also mean being willing to talk about the hard things, ask for support, listen to another dad, laugh together, or simply say, *“Yeah, I understand.”*

There’s no expectation for how you have to show up.

**Just come as you are.**

And dads — **please come!** We would love to see a great group Thursday night to support Trey and the other dads helping with this effort, and to help shape what the Share & Care dads’ community can become. 💛

🔒 **To protect the privacy of our families, we are not posting the actual meeting link publicly.** The dial-in information will be shared inside our private Share & Care Facebook group.

👉 **Join our private Facebook group here to get the meeting link:**
https://www.facebook.com/groups/care4rare

Already a member? Just head over to the group for the meeting information.

📅 **Thursday, August 13**
⏰ **8:30 PM ET | 7:30 PM CT | 6:30 PM MT | 5:30 PM PT**

**Brave enough to support one another.
Man enough to be vulnerable.**

08/08/2026

This place was PHENOMENAL! Raiv is not a “bad kid” by any means, but behavior management is tough when the only child you’ve ever parented has special needs, so you’re never sure what’s “normal” and what is due to TTD or side effects of meds. Strategies that work for typical kids don’t seem to work the same way for Raiv, so Trey and I needed a little guidance.

The doctor here spent well over 2 hours with us, played with Raiv, really got to know us as a family, and brainstormed some great ideas with us. They had a nurse constantly rotating toys, there was a sensory swing in the room, the whole place was treehouse themed. They even sent Raiv home with a really nice toy, a book, and a sticker. Trey and I were sent home with a solid plan and good direction to focus our behavior management efforts!

07/25/2026

Check out those fine motor skillzzzz! Tremor meds are kicking in already I think!

07/18/2026

This is Raiv's dad Trey. I am starting a US dads group with a group chat and a monthly virtual meeting for CS and TTD dad's. I already have many numbers from the conference last week, but if you were not able to attend and you are interested please message this account and I will get you added to ths group.