Have you read our winter newsletter yet? In case you haven’t, you can check it out here! Our newsletter is filled with a vast amount of information about the prior year, clinical trials, drug developments, a COVID-19 statement from our medical advisory committee and so much more. We really wanted to provide our MG community with a review of 2020 milestones because as you know, it was an unprecedented year. Below is a detailed recap of all our achievements for the 2020 year:
January
One of the most exciting moments in 2020 was when we established a clinic partnership with St. Louis University! We at the MGA had been serving the St. Louis MG community for quite some time, but we wanted to strengthen the relationship even more. After an incredible amount of planning and deliberation, we met with Dr. Jafar Kafaie and Dr. Ghazala Hayat of St. Louis University in 2019 to pitch our MG clinic. Before we knew it, it was settled. The MGA St. Louis Clinic was confirmed and we were able to start seeing patients on January 7th, 2020!
February
To keep the momentum going, the MGA held its first Leap in and Learn Educational Forum on Rare Disease Day in St. Louis. This was a well-received event, as so many of our St. Louis patients enjoyed listening to various speakers discuss an in-depth review of MG, clinical trials, and new drug developments. The format of the event really allowed people to learn and become educated about all the progress we have made in the MG community. Thank you to the Yokota Foundation for the continued support and for allowing us to offer this first-ever event.
March
March is when things started to take a turn. COVID-19 made its way into our lives and we made the appropriate decision to suspend our in-person clinics. We are no strangers to adapting to unprecedented circumstances; the MGA quickly adjusted and purchased a subscription to Zoom in efforts to continue supporting our patients.
April
Now, we never said adaptation was going to be easy. Thankfully, Kansas City Program Coordinator, Tanya Renner, took the reins on managing our Zoom meetings and organized Zoom tutorials for patients and families who needed assistance. Although we had to postpone our 60th birthday celebration as well as other large events, we had enough on our plate as we continued to acclimate to a virtual environment.
May
One of our biggest events, the MGA Triple Crown Showdown, transitioned to a virtual race. How is that even possible you might ask? People from all over the country took it upon themselves to still support us, just from the comfort of their own homes. People participated in their own 5ks and because of their participation, we were able to raise more than $38,000.00! We were overwhelmed with gratitude, to say the least and realized that there was hope in spite of all that our world was faced with during this time.
June
June is always a big month for the MGA, but this past year happened to be even more monumental. Like many states, we celebrated MG Awareness Month; so much so, that we obtained a proclamation in Missouri, officially declaring it Myasthenia Gravis Awareness Month!
July
In order to keep this organization running smoothly, we maintain a patient database to support our patients on a personal level. In the past, the MGA used, let’s say, a “vintage” database…In July of 2020, we transferred all of our records to Salesforce, a software database that allows us to help our patients more efficiently. Special thanks to Michael Eagan, Vice President of MGA Board of Directors, and the team at ATG Group for assisting in this monumental project.
August
By August, the virtual setting was becoming more familiar than we would have liked, nevertheless, we wrapped up the summer months with some great online events including the Cy’s Crown Trivia Night Facebook Fundraiser and Dr. Jafar Kafaie’s presentation on Aging and MG. The fundraiser raised more than $2,500.00 and Dr. Kafaie’s presentation was a lively discussion that allowed many MG patients to engage and interact with one another.
September
Earlier in the year, we introduced a new program called Virtual Monthly Meet Up. We really wanted to reach as many people as possible during the pandemic, and this program allowed us to discuss important topics in great detail by experts in the field. In September, we had a comprehensive presentation on the vast number of MG clinical trials that were taking place. Clinical trials provide opportunities for researchers to not only develop better drugs for MG but can also be a great avenue for MG patients who either do not necessarily respond to current MG therapies or need better access to certain treatments.
October
We had some sense of normalcy when we were able to conduct our 2nd Annual Reel in MG Fishing Derby event in-person. The event was a safe gathering where we social distanced and provided MGA masks and sanitizer. We wouldn’t have been able to do this if it wasn’t for the Warren & Macias families. They were instrumental in not only funding this event but inviting the MGA community to their beautiful property to enjoy the warm, fall day.
November
Never in our wildest dreams did we think we would be hosting the 60th Annual Meeting virtually, but we pulled it off! It took a lot of work, a lot of people, and a lot of patience, but the feedback we got was tremendously positive. The meeting consisted of more than 100 attendees including physicians, board members, staff, MG patients/families, and other people in the MG community who were interested in what we accomplished over the past year. We would like to thank our sponsors including argenx, ARJ Infusion Services, Alexion, Immunovant, Momenta, Catalyst, and UCB as well as our board of directors and medical advisory committee for their instrumental role and support. Lastly, thank you to Distinctive Meeting Group for their assistance with planning this meeting!
December
We made it to December. It was a tough year, but we were able to make contributions to MG research at our various sites including the University of Kansas Medical Center, the University of Missouri, and Saint Louis University. Given the financial toll the pandemic took on so many businesses and nonprofits, this was an exceptional milestone that we were proud to be able to do in spite of all that was thrown our way.
All in all, 2020 really was a year like none other. We know, we know, you are probably sick of hearing that, but it’s true! The world wasn’t really prepared for 2020, and the MGA was no exception. Nevertheless, we persisted. There were a few tears, some frustrations, and a lot of deep breathing. We are a little over a month into 2021 and things are looking brighter. Keep shining, MGA community!
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