Meeting in person at the 2023 Patient Conference
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MG patients discuss finding community at the MGFA Patient Conference

MG patients discuss finding community at the MGFA Patient Conference

By Kate Stober

The MGFA National Patient Conference in New Orleans is just a few short weeks away, and we are so excited to gather in person and virtually. The conference helps connect, educate, and inspire members of the MG community. This is perhaps the only place each year where patients, caregivers, researchers, and industry representatives come together to discuss all facets of myasthenia gravis.


It's not too late to register should you decide to fly or drive down to meet us in person, but we also want to highlight our virtual registration option. This low-cost, low-stress alternative allows you to access every session in real time. Virtual attendees can ask questions via Zoom and engage with each other in the MGFA Online Community. Click below to register for either in-person or virtual attendance.


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If you’re unsure about why you should attend the MGFA National Patient Conference, we asked a few attendees to share why participating is so important to them.


Tom Attends to Make Connections and Learn as Much as Possible About Myasthenia Gravis


I’m attending to meet as many people as I can. I want to meet pharmaceutical company representatives that are going to be there. I want to meet others with MG. I want to introduce myself to people and really take it all in. This disease I knew nothing about has really impacted my life, so I want to understand as much as I can, from the science side of it but also from the community. There are people who have been diagnosed for 30 years – what have you been doing to survive this awful disease? What’s the best way you’ve found to convey to people in your life what’s going on?


I was diagnosed in 2019. I consider myself extraordinarily lucky – not only was I was diagnosed in less than a week, but I was able to get into a practice with a top neurologist who specializes in MG here in the Boston area. But in January this year, I had a severe exacerbation. For four weeks, I could barely walk – it really degraded quite quickly. You don’t know how sick you are until you get these symptoms. If I can use my experience to help other people, that’s what I look to the conference for. How do we help others? How do we learn? We know we’re all different.


I also have a background in the life sciences as an executive leader in the pharmaceutical industry. I’m a person who knows how to solve complex problems in the sciences. I want to talk to scientists and researchers face to face at the conference. I’m comfortable doing that, and I want to be a representative for others who aren’t comfortable with that. I don’t know if there will be a cure in my lifetime, but there will be big strides in the next 10-15 years. If I can do something that can affect people with MG after me, that’s what I live for.


I would highly encourage any patient and caregiver to attend the MGFA National Patient Conference – this is your chance. Researchers, they want to listen to you. The community wants to hear from you. We’re the ones with the answers. I would encourage anybody to attend. I think it’s well worth it.


—Tom B.


Hannah Attends to Give Back and Spread MG Awareness After Finally Finding Answers For Her Symptoms


Like many others, I had to fight to get my diagnosis of myasthenia gravis after dealing with worsening symptoms for the better part of a year. Throughout the process I felt very alone, scared, and depressed because I didn't know what was happening to my body and I had been told over and over by medical professionals that my symptoms were likely due to stress.


Eventually I was able to get tested and was diagnosed in March of last year.


Within three days of my diagnosis, I attended my first support group meeting through the MGFA, and around that time I also received a welcome packet in the mail with MGFA educational materials. Being able to connect with others who have MG really helped me feel encouraged and less alone.


Soon, I was giving back as well. I am now the co-lead for the Myasthenia Advocacy for Young Adults (MAYA) support group, and I volunteered for the Tampa / St. Petersburg MGFA Health Fair last year. This year I am assisting in planning and volunteering with the 2023 health fair as well. I also helped raise $2,500 for the 2740 challenge and can't wait to fundraise again this year.


The MGFA is such a fantastic non-profit, and the mission is personal to me. I volunteer with the MGFA because I don't want another person to have to suffer with myasthenia gravis without a diagnosis or treatment.


I can't wait to go to the conference in NOLA to be able to meet with individuals who have been impacted by myasthenia gravis. This will also be the first time my MAYA co-lead Jessica and I will meet in person since all of our MAYA support group meetings are over Zoom. I am also excited to make new connections through the MGFA conference and gain more knowledge so that I can continue to spread MG awareness.


—Hannah E.

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