The Yaya Foundation for 4H Leukodystrophy

06/17/2026

Just added! The Family Call on July 12 will include a discussion led by Dr. Valerie Gregor titled "Why Don't We Have a Cure?"

All are welcome - the discussion with Dr. Gregor will be recorded and posted to YouTube later in the week. The following Family Call portion will not be recorded to respect the privacy of our families.

Registration is not required, but is suggested! https://us02web.zoom.us/meeting/register/WVcvPwKbTnuI8HAQNu4OjA

06/15/2026

Join us for our July Family Call!

Sunday, July 12 at 1:00 PM US Central / 8 PM European Central

Register here to get the Zoom link sent to your inbox: https://us02web.zoom.us/meeting/register/WVcvPwKbTnuI8HAQNu4OjA

04/15/2026

Coming up on Sunday! All are welcome - we will be discussing ideas on how Yaya Foundation can better serve YOU! Registration is suggested to receive the Zoom link: https://us02web.zoom.us/meeting/register/TZrxKVUUTzKv3ZljfNJ1Sg

04/11/2026

Join us next week for the April Family Call, hosted by Tammy Bock! We extend an especially warm welcome to newly diagnosed families, but these calls are open to all. We will be discussing ideas on what the Yaya Foundation can provide to 4H families in the future and everyone's perspective is crucial! Please register to receive the Zoom link: https://us02web.zoom.us/meeting/register/TZrxKVUUTzKv3ZljfNJ1Sg

03/07/2026

Coming up this weekend! The Family Call Debrief will be held on Sunday, March 8, at 3 PM US Central time.

Haven't registered yet? Click here: https://us02web.zoom.us/meeting/register/72TYTTI-Te2IxCz83rNUqg

02/27/2026

DATE CHANGE!! The Family Call Debrief will be held NEXT Sunday, March 8, at 3 PM US Central time. If you had previously registered, you should receive an email with the updated time. You do not need to register again.

Haven't registered yet? Click here: https://us02web.zoom.us/meeting/register/72TYTTI-Te2IxCz83rNUqg

Hope to see you next week!

02/25/2026

Check out this scientific article summary by Dr. Margo Hutchison and Dr. Elsa Keeler! https://drive.google.com/file/d/1ihkt428IuU8y4ldhj_QdQnuTJ-fyoZKS/view?usp=drive_link
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"Researchers reviewed the medical records of over 2500 patients with leukodystrophy, including 29 individuals diagnosed with POLR3-related leukodystrophy, asking the question, can key health events be predicted?"

02/22/2026

Join us next week on our Family Call with Tammy Bock! This session WILL NOT be recorded - we welcome everyone to join us and share to their own level of comfortability. Register to attend to receive the Zoom link directly to your email inbox here: https://us02web.zoom.us/meeting/register/72TYTTI-Te2IxCz83rNUqg

02/20/2026

Check out the playlist on YouTube of our Virtual Mini Conference sessions! https://www.youtube.com/playlist?list=PLMAkG0dcGUyZZjR3RIIIbUh5B4-8_r8Ep

Thank you to everyone who was able to join us live - and to our presenters for making this Mini Conference possible. ❤

Share your videos with friends, family, and the world

02/15/2026

The last session of our Virtual Mini Conference will be held on Sunday, March 1 at 3 PM US Central with Tammy Bock! This session will NOT be recorded, and we encourage all to attend. Registration is recommended so that you receive the Zoom information directly to your inbox: https://us02web.zoom.us/meeting/register/72TYTTI-Te2IxCz83rNUqg