A Message from Myotonic's CEO about COVID-19

A Message from Myotonic's CEO about COVID-19

Dear Myotonic Family, Friends, and Partners,

I hope this message finds you all well and healthy. Like many of you across the US and in several other countries, residents of the Bay Area in California, including Myotonic staff, are under strict Public Health orders to Shelter in Place for the next several weeks. Due to COVID-19, schools, restaurants, and non-essential businesses are closed and we are all required to stay inside our homes. We want to be sure you know that all Myotonic staff are prepared for this shift and as of March 17th we have all been successfully working from home. Myotonic is open, our website is active, and our resources are available.

We know these new restrictions may feel incredibly challenging but they are essential to keeping our communities safe and healthy. This six-minute video helps explain why social distancing is critical right now. Myotonic thanks each of you for engaging in social distancing practice and following CDC guidelines to help protect yourselves, your families, and our most vulnerable community members, including those living with myotonic dystrophy.

Experts have shared that COVID-19 can cause lung and heart complications, which is of significant concern for those living with myotonic dystrophy. The number one thing you can do right now to stay healthy is avoid exposure to the virus and follow the CDC guidelines. Avoid the hospital by calling your doctor first if you have questions or begin to feel ill, be sure you continue to take your medications as prescribed, and ensure that you have plenty of prescription medication available at home so you don’t run out.

Myotonic will send out any new guidelines and/or best practices related to our community as they become available.

Support

Our in-person Support Groups have been canceled worldwide until it is safe to reconvene them. However, we recognize the vital importance of support groups, especially during this uncertain and sometimes stressful time. In lieu of in-person groups, we have added, and will continue to add, additional phone, virtual, and Facebook support groups as facilitators are available. This includes a new virtual support group meeting open to the entire community next Wednesday, March 25th. Please check our Support Group calendar regularly for updates and let our Program Director, Leah Hellerstein, LCSW, MPH, know if there is another format that may be helpful for you: leah.hellerstein@myotonic.org.

If you have questions about financial support during this time, please visit our financial resources page. If you would like help navigating financial resources in your community, Myotonic is here to help and we encourage you to reach out.

Additionally, if you would like assistance navigating any other part of your healthcare, including insurance, finding medical care, or you just want to talk, please contact Leah at the above email address.

Conference

Many of you have asked about our Annual Conference, currently scheduled for September 11-12th in San Diego. At this time, we do not have enough information to determine if we will hold the conference as scheduled. We are considering all possible options for the 2020 Annual Conference. We are closely monitoring the situation and will make a decision based on how the coming weeks unfold.

While we fully understand the social and educational value that the Annual Conference brings to the community, the health and safety of the myotonic dystrophy community remains our number one priority. If the conference cannot be held as planned due to public health reasons, Myotonic will make every effort to hold the conference in an alternative format. We will keep you updated as plans develop. We appreciate your patience and support during this challenging time. Our Conference page will be updated as soon as we have more information.

Communication

As we navigate these uncharted territories and families are learning to work from home while also homeschooling their children and caring for elderly relatives, we know that many of you are seeking reliable information about the current situation as well as ideas to help brighten each day. With that in mind, the Myotonic team will occasionally use Facebook and Twitter to share information and ideas.

As the Myotonic team will be unable to return to our physical office for the next few weeks, we ask that you do not send mail through the post during this time but instead email us individually or to our Myotonic general email account at info@myotonic.org. Donations to Myotonic may continue online through regular channels and are appreciated.

Please know that the entire extended Myotonic team is with you in spirit, we are in this together, and we are sending you our very best.

In health and community,

Tanya Stevenson, EdD, MPH
Chief Executive Officer

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