Share & Care Cockayne Syndrome & Trichothiodystrophy Network

08/29/2026

Can we get some birthday wishes for Charlotte and Augusta! 🎉💛 We have TWO birthdays to celebrate! 💛🎉

Sweet Charlotte turned 6 years old a few days ago, and today Augusta is celebrating her 24th birthday! 🎂🎈

In our rare community, birthdays are extra special. We aren’t just celebrating another year older—we’re celebrating another year of your story, your journey, and the joy you bring to our Share & Care family. 💛🦋

Happy 6th Birthday, Charlotte, and Happy 24th Birthday, Augusta! We are so happy to celebrate both of YOU!

🎉💛🎂🎈

08/22/2026

🎉💛 Can we get 6 birthday wishes for Olive’s 6th birthday? 💛🎉

Today our sweet Olive is SIX years old! 🎂🎈🥳

Happy 6th Birthday, Olive! We hope your special day is filled with lots of smiles, laughter, love, fun, and all of your favorite things. 💛

We are so happy to have Olive and her family as part of our Share & Care family, and we hope she feels extra special and loved today!

🎉 Help us celebrate Olive by leaving her a BIG birthday wish in the comments! 💛🎂🎈

08/20/2026

08/18/2026

🎉💛 Let’s get 7 birthday wishes for Ben’s 7th birthday! 💛🎉

Our sweet Ben celebrated his 7th birthday a few days ago, and we’re sending him some BIG birthday love! 🎂🎈

Ben has had quite an adventure this year! He and his family traveled to Slovenia for a CS gathering and then joined us at our Share & Care conference in Minneapolis, connecting with researchers working to better understand Cockayne Syndrome. 🧬

Thank you, Ben, for helping researchers learn more about CS! What researchers learn from children like Ben may someday help other children with CS, too. 💛

And there was plenty of fun! Ben enjoyed the snakes 🐍, the aquarium 🐠 and, in this photo, a yummy Dilly Bar donated by Dairy Queen for our conference attendees! 🍦😋

Happy 7th Birthday, Ben! We love having you and your sweet family as part of our Share & Care family! 💛

🎉 Let’s fill the comments with at least 7 BIG birthday wishes for Ben!

08/17/2026

URGENT: Families Needed for CS and TTD Microbiome Study

University of Minnesota researchers urgently need:

• At least 3 more U.S. or Canadian families with a child diagnosed with Cockayne syndrome
• At least 5 more U.S. or Canadian families with a child diagnosed with Trichothiodystrophy

The study compares children with CS or TTD with their unaffected biological siblings and parents living in the same household. Families with unaffected siblings are especially valuable.

Participants must be antibiotic-free for at least 30 days. A new simplified enrollment form is now available:

https://redcap.link/cockaynesyndromemicrobiome

Ultra-rare disease research depends on family participation. With so few diagnosed patients worldwide, every eligible family matters.

Please enroll or share this post with rare-disease groups, genetics communities, and families who may qualify. Your share could help researchers find the families needed to move this study forward.

08/15/2026

🎉💛 **Let’s get 17 birthday wishes for Adam’s 17th birthday!** 💛🎉

Adam celebrated his **17th birthday** a couple of days ago, and we couldn’t let it pass without celebrating him!

Adam has been part of our Share & Care conference family since our **Atlanta conference in 2015** and has been at **every conference since!** Over the years, we’ve had the privilege of watching him grow up, and he has become such a special part of our Share & Care family. 💛

**Adam, we love you and are so happy you’re part of our group!** We hope 17 is a wonderful year for you! 🎂🎈

🎉 **** Drop a birthday wish for Adam in the comments! 💛🥳