Dear Myotonic Community,
Myotonic’s Founding Board Chair, Shannon Lord, once reflected in her memoir Family Roots that “humankind is bonded most deeply around adversity and loss.” During this challenging time of quarantines and isolation, Shannon’s words are an important reminder that we are not alone and that now is an ideal time to share and re-connect with our loved ones. This week marks the one-month anniversary of shelter-in-place orders in the San Francisco Bay Area and while these restrictions are sometimes trying, every day I am inspired by the acts of courage and messages of love and unity across the globe.
I know many of you are concerned about how we might proceed with our events given the impact of the COVID-19 pandemic. So, I want to share updates about the Annual Conference, introduce our new Friday Afternoon Webinar Series (launching this Friday with Drs. John Day, Jacinda Sampson, and Michelle Cao!), announce new Support Group opportunities, and more.
After significant discussion and careful consideration, our Board of Directors has voted to postpone our Family Conference until fall 2021. It was an extremely difficult decision but we are confident it is the right one. While we fully understand the social and educational value of the conference, our number one priority must always be the health and safety of our community. We simply do not know enough about the potential impact of the coronavirus in future months and we are not willing to place our community at greater risk of infection. In lieu of conference planning, our team will now focus on strategic planning efforts that will help identify key priorities for the next few years. You can read more about the conference decision and strategic planning here.
We continue our efforts to keep our community connected, active, and well-informed and are excited to introduce our new Friday Afternoon Webinar Series, new Support Group opportunities, and several upcoming resources.
Beginning this Friday, April 17th at 12:00 PM PDT, we invite you to participate in the first of a series of Friday Afternoon Webinars. This Friday we are proud to bring you Sleep and Breathing Support for Myotonic Dystrophy during the COVID-19 Pandemic, presented by the fabulous Dr. John Day, Dr. Jacinda Sampson, & Dr. Michelle Cao from Stanford University’s Neuroscience Health Center.
Join us every Friday at 12:00PM PDT through June for our new Friday Afternoon Webinar Series. Registration is now open for the many new topics below:
- 4/17 - Sleep and Breathing Support for DM during the COVID-19 Pandemic - By Drs. John Day, Jacinda Sampson, and Michelle Cao
- 4/24 - How Common is Myotonic Dystrophy in the United States? Findings from the Recent Prevalence Study - By Dr. Nicholas Johnson
- 5/1 - Food Preparation for the DM Community - By Dr. Leslie Krongold
- 5/8 - Caring for the Caregiver - Valeria Ochoa
- 5/15 - Virtual Chair Yoga - By Ellen Shapiro
- 5/29 - Gene Editing for DM - By Dr. Vincent Dion
- 6/5 - Exercise for the DM Community - By Drs. Katy Eichinger & Tina Duong
Myotonic understands the importance of community connection and support during these uncertain times and has increased the number of Support Group sessions, both live (virtual) and via Facebook, including one open to the entire global community this Wednesday, April 15th. You may find more information here and as more sessions are opened by our incredible Support Group facilitators, information will be updated on our website.
Upcoming Support Group Opportunities:
- Adult Onset Facebook Chat - 4/14, 4/21, 5/19
- German Language Support Group - 4/14, 5/12
- Nationwide Community Calls – Open to All - 4/15, 5/20
- DM2 Support Group Calls - 4/16, 5/21
- Caregiver Support Group Call - 4/29
- Congenital DM/Caregiver Facebook Chat - 5/5
- Juvenile Onset Adult (JOA) Facebook Chat - 5/5
Several new resources are in development and will be available over the next few months on our Toolkits and Publications webpage. These include:
- Myotonic Employment Access Toolkit
- Health Insurance Considerations for People Living with DM in the US
- Exercise Guide for Individuals with Myotonic Dystrophy
- Update to: Role of Physical Therapy in the Assessment and Management of Individuals with Myotonic Dystrophy
- Guide for Caregivers of Adults Affected by Juvenile-onset DM
If you have an idea or have identified a need for a new resource for the DM community, email Leah.Hellerstein@myotonic.org.
Thank you all for helping keep yourselves, your loved ones, and our entire community safe and healthy during this pandemic. Thank you for your continued support of Myotonic.
Tanya Stevenson, EdD, MPH
Chief Executive Officer