COVID-19 threw many of us for a loop (myself included), but those with MG are all too familiar with the “flexible lifestyle,” constantly adapting to the unknown or unexpected. Just like many other nonprofit organizations, we at the MGA were forced to reevaluate the fulfillment of our mission during the stay-at-home order. Our team critically examined how we were going to execute our programming, considering factors of accessibility and the population we serve.
After much deliberation, we decided it would be most effective to transition our in-person support group meetings to a virtual platform. Our minds tend to focus on the possibilities of all the things that could go wrong, but little did we know the good that would come out of this new effort.
The response was overwhelmingly positive. From regular support group attendees to new faces in the MG community, our virtual programming took fulfilling our mission to new heights. Sure, navigating the technical difficulties of meeting platforms was a bit of a learning curve, but once we worked out the kinks, we found our organization was thriving in the virtual arena.
Our support group meetings featured various guest speakers including physicians and dieticians and concentrated on numerous topics including the drug, Soliris, and MG and nutritional guidance. Having the ability to connect professionals in the healthcare industry to patients all across the heartland virtually offered those with MG to access resources they may not have potentially had prior to quarantine. As we know, traveling or having to leave the home can be problematic for some MG patients, thus, the cyberspace prompted an opportunity for people to participate like never before.
I think one of the biggest takeaways for me was recognizing that this virtual platform had and continues to have so much potential for us to grow and expand our reach. Moreover, I saw that people appreciated our genuine effort to stay connected with the patients we support. After coming to this conclusion, we at the MGA decided to continue our virtual support group meetings with the intent to maintain the relationships we built over this time period.
On every third Monday of each month at 6:30 PM (unless otherwise stated), the MGA will host a virtual support group meeting. Our goal is to ensure that patients are ultimately being supported throughout their MG journey, even from the comfort of their own homes. This program is in addition to our regular in-person support group meetings. Our in-person support group meetings will resume soon; stay tuned for specific dates in your area.
Join us on June 15th at 6:30 PM for our “first” virtual support group meeting. I will be sharing my experience with MG and briefly discuss my role as the new program coordinator of the MGA in the St. Louis area. I look forward to seeing you there!
[To attend this virtual meeting and receive the meeting credentials, please email Tanya, our Kansas City program coordinator, at tanyarenner@mgakc.org] #MGA #MGADigest #MGStrong #MGAwarenessMonth #MyastheniaGravis #IHaveHeardOfMG This blog post was written by Meridith O'Connor, St. Louis Program Coordinator of the Myasthenia Gravis Association.
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