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Let's Connect! Online Support Groups

Join an online discussion group or a yoga class. 

We recognize that this is an extraordinary time and that the COVID-19 situation is extremely stressful and frightening for most people in our community. Parents, caregivers, grandparents, teens, and adults with Barth syndrome - you may be literally and figuratively isolated but you are not alone!

In addition to providing COVID-19 specific guidance and precautions for individuals with Barth syndrome, we invite you to connect with others through an online support group. While the situation in our world seems to change daily, one thing is constant. We are a global Barth syndrome family and we are here for one another. 

Take care of yourself and your mental and emotional health by connecting with others, and take advantage of a free online yoga class. Details below. If you have any questions or need additional help, please email us

Stay in touch via Facebook, Twitter, and Instagram. We would love to get social with you during the coronavirus pandemic - but at a distance! 


DISCUSSION GROUP SCHEDULE

WEEKLY! 

  • WEDNESDAY (8PM EDT):  Quarantinis Virtual Happy Hour for adults in the Barth community to connect during COVID-19 isolation
    • Facilitator Nicole Derusha-Mackey
    • Click here to join, Meeting ID: 368 115 254, Password Barth
  • FRIDAY (12PM EDT): BSF Round Table Discussion for EVERYONE! 
  • SATURDAY (12PM EDT):  Virtual Show and Tell for children in the Barth community to show their talent or just tell us about their day.
    • Facilitator Nicole Derusha-Mackey
    • Click here to join, Meeting ID 873 6500 4744, Password Barth

REQUEST MEETING PASSWORD FOR FRIDAY ROUND TABLE DISCUSSION HERE or visit the Barth syndrome family chat page on Facebook

  • 4PM EDT: Parents of children with Barth syndrome ages 0-4 
    • 1st Thursday of each month. 
    • Facilitator Chris Hope
      Click here to join, or use Zoom Meeting ID: 369 355 3728
  • 4PM EDT: Parents of children with Barth syndrome ages 5-10 
    • 1st Thursday of each month. 
    • Facilitator Michaela Damin
      Click here to join, or use Zoom Meeting ID: 997 8072 8887
  • 4PM EDT: Parents & teens ages 11-17 
    • 1st Thursday of each month. 
    • Facilitator BJ Develle
      Click here to join, or use Zoom Meeting ID: 333 055 172
  • 8AM EDT: Individuals with Barth syndrome ages 18 and up 
    • EVERY OTHER WEEK
    • Facilitator Peter van Loo
    • Click here to join, or use Zoom Meeting ID: 920 5742 5911
  • 5PM EDT: Individuals with Barth syndrome ages 18 and up
    • EVERY OTHER WEEK
    • Facilitators Iyar Mazar and Jonathan Stokes
      Click here to join, or use Zoom Meeting ID: 920 5742 5911

Refer to the BSF Calendar for the full schedule at a glance.


ALL LEVELS ONLINE YOGA

Cristy Balcells is a nurse, mother of a child with mitochondrial disease, prior ED of MitoAction and a yoga teacher. During the COVID-19 pandemic, Cristy is offering free online yoga All are welcome (no fee). 

  • Monday 9:30 am EDT 
  • Tuesday 12:00 pm EDT 
  • Wednesday 12:00 pm EDT 
  • Thursday 9:30 am EDT 

To join, simply click on the Zoom meeting link below. You'll need a computer or tablet/phone, a yoga mat, a cushion or blanket to sit on, and comfortable athletic clothing. Modifications are offered, making this an all-levels program intentionally designed to build strength and reduce stress.

Click here to join or cut and paste this link: https://zoom.us/j/710992357

Meeting ID: 710 992 357

Meeting Password:  hope (all lowercase)

For questions about this program, email Cristy directly.

 


Join by clicking the image to connect to Zoom; the password is Barth


A virtual show and tell! Click on the image to join, the password is Barth

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