<< Women Supporting Women >>

 

The Kabuki Syndrome Moms Virtual Support Group was established to help moms (and female caregivers) connect, share and support each other. Raising a child with a rare disease often causes isolation and even self-doubt. This group replaces our original Parent Mentor Program, but the goal for this program is the same ... that we would provide a platform and opportunities for Mom's to connect, offer support and develop lasting personal connections within the ATK community. 

​

This group launched in June 2023. We had 17 participants at one point and enjoyed a time of connecting with other rare Mama's across the United States - and one from Australia too! We plan to meet on the SECOND THURSDAY of each month at (NEW TIME) 9:00 pm EST for approximately 90 minutes. We will re-evaluate this day/time three months after launch. 

 

Participants will meet as a group for the first 15 minutes and then have the opportunity to join one of several topic-specific breakout rooms. This will allow participants the opportunity to connect in smaller groups, allowing for everyone to participate in conversation. While participants have the freedom to hop from room to room, we will interrupt at the 15 mark to allow participants to change rooms or even stay where they're at.

 

Most of our Mama's spend a great deal of time talking about, education, and advocating ALL things related to Kabuki Syndrome. Because of this, there are days we just need to set everything Kabuki to the side and take a breath. Having said that, we will be providing a Self Care / Kabuki Free chat room for Mama's!

 

We will continue to update this page as adjustments are made to provide the best experience possible. 

​

This group will be hosted through zoom and registration will be required for each event. 

​

If you would like to have information related to this Moms Group emailed to you, please enroll via the link below. We anticipate sending one or two emails per month with event information, group updates, polls regarding group topics, needs or anticipated changes, requests for moderators, etc. Additionally, those that sign up for this mailing list will have the opportunity to program development information and volunteer to mentor or request to be connected to a parent mentor with experience in specific areas.

​