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Have you ever attended an MG conference?
The Myasthenia Gravis Foundation of America conference is coming up this April, bringing together people living with MG, caregivers, clinicians, and researchers in one place. We’re curious about your experiences and thoughts around MG conferences in general.
•Have you ever attended an MG or rare disease conference, either in person or virtually?
• What parts of conferences feel most helpful or most challenging with MG?
• If you could change the agenda, what topics would you want to see discussed to move MG care forward?
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2 Replies
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Yes … I attended the National MGFA conference that was in Phoenix recently. I also attended two mini morning MGFA mini-events that were in Phoenix on a Saturday, around January 2024 and 2025 (that closed up too soon & not all day). They have their good points and their bad points. The poor speakers present the same standard MG neuro junction speech (that all MG patients have heard many times before) and seems to be meant to educate Phoenix doctors, who were not attending the event.
The GREAT SPEAKERS and PRESENTATIONS … talk about MG patients needs or interviewing MG patients … and have a moderator asking questions … so we understand better our MG Disease … and tips of how to manage our MG, and how to find local doctors, who are NOT MG CLUELESS ! The best part of these events were … meeting other MG PATIENTS JUST LIKE US. So THE BEST TIME … was when we were sitting at tables having breakfast or lunch buffets out on the Phoenix hotel patios. Then we could exchange information and ask the needed questions … where are you from, how long did it take you to be diagnosed (8 months/2 hospitals for me), what meds are you taking, what bad effects did you get from them (PREDNISONE gave me DIABETES II, which took two years to wean off of shooting up … after PREDNISONE was killed 8 months later cold turkey for me), and who are the GOOD and the BAD DOCTORS and HOSPITALS … to recommend or AVOID … if I am ever well enough to travel to your area. I ZOOM with my four MG Support Groups, including http://www.myaware.org in the UK. But being able to SEE and TALK TO … patients with my MG disease IN PERSON … was WONDERFUL !!!
myaware.org
Myaware is the only charity in the UK dedicated solely to the care and support of people affected by myasthenia.
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Yes I attended the last MGFA Conference in Phoenix. I ZOOM with my four MG SUPPORT GROUPS. But ZOOMS sometimes have its “technical issues” where there is often no sound, no video, or its pop-up says AH SHUCKS or AW SNAP … and you have to sign back in. So the Phoenix Conference was WONDERFUL … as you could meet other MG Victims … and compare notes, ask questions, and see where they are from … should your MG get STABLE ENOUGH and IN REMISSION … so that it is safe to travel out of town. So the best part was sitting around the outdoor Phoenix hotel during session breaks eating from the buffet and ASKING IN PERSON … how the other MG attending are SURVIVING with their own situation. What is their story, their meds, their recommendations for MG INTELLIGENT DOCTORS, who have at least heard of our disease. I also tried my “Two minute elevator speech” with people and booths. Every one treats that 29 year old MG-ADL paper (from 1997 Texas) , … as if it was a HOLY GRAIL, when it has never been revised and only has 8 of my 18 MG symptoms.
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