[Jodi Enders]

I attended the MGFA Annual Conference Virtually last year, and it was great. I plan to attend this year as well. – Jodi, Team Member

[shawna-barnes]

Awesome! I hope to attend this year.

[bear]

My wife and I attended the one in New Orleans a couple of years a go. The following year it was held in Tampa, FL; we did not attend that one.

I then asked MGFA to have one in the West sometime and they are this year; yea!

I figured it would be (if it happened at all) in LA or Sin City but no they chose Phoenix. Great because we live in northern AZ; but, will still have to stay at the hotel (to far to commute).

I highly recommend the conference. We had to pay in NO $400 to attend. This year it is free to attend. You will meet a lot of people with the same disease which connects us all. Plus, you’ll get the latest on MG: drugs, treatments….so on.

As a side note the Drug Companies set out quite a spread of food and it’s all free.

P.S. Phx will be approaching 100 degrees next week; so remember to bring clothes accordingly.

But remember it’s (Phx) is a dry oven. 😎 Seriously, it shouldn’t be too bad because all the concrete and asphalt hasn’t had enough time to really heat up. In other words there will be quite a variance from day to night in degrees. It’s the summer months that are unbearable; i.e. not much cool down at night. Phx metro area becomes a ‘heat island’.

[James Guthrie]

What’s the dates for conference?

[Leigh]

Have never attended but will try to attend the next one virtually. So glad that is an option. I would consider attending in person when it is in driving distance. I would like more information on Seronegative. what clinical trials are including this group & what of the new meds will be available for seronegative in the future. Also if there is any further research on new detectable antibodies to test for.

[staytuned]

No, I was not aware.

[Jenny]

I have been to 4 in person and 1 virtually. I have had MG for a very long time. I always learn new things at the Conference. I also enjoy meeting others with MG. It is so nice to sit at a table and discuss our different journeys and offer advice to the newly diagnosed. It is so worth it!!

[mik]

Attended two virtually and enjoyed them both.

[jeri]

Does anyone have information on the next MG Conference? I would like to attend.

[Sharon Haw]

I attended the MGFA Conference for the second year virtually last week for free as a patient. I prefer virtual attendance because I take Cellcept (immune suppressant) and avoid large gatherings. This year, I walked away with a few useful bits of info that I will discuss with my neurologist at the next appointment. One takeaway was the sheer number of new developments in MG treatment on the horizon. Another stand-out tidbit I learned is that it takes a long time for some immune suppressants like Cellcept to become effective and conversely, to wean off it. If one is reducing a Cellcept dose, it needs to be done very slowly, like reducing by 500 mg in a year, to remain stable. Which explains when my neurologist said a couple of years ago that I could try going off it to see if I was in complete remission, he said at the time there are no guidelines for weaning off Cellcept,but I could try cutting the dose in half (1000mg less per day). Unfortunately, MG symptoms like hand weakness and double vision started to return after a month on the lower dose so I went back to 2000mg per day. I experience a lot of breakthrough infections from what appears to be too much immune suppression and my neurologist suggested again that we try to reduce the Cellcept dose. I now know that I need to discuss with him how to slowly reduce the dose from 2000 mg per day to 1500 mg per day over the next year to see if that will make a difference in the number and frequency of infections I get. So attending the conference has given me a lot of hope.

[Kent Moore]

Interesting that no one has mentioned where and when it is. I looked up MGFA Conference and the only one I can find for 2025 is in The Hague in The Netherlands, May 13 – 15. Is this what y’all are referring to?

[p-k]

Here is the link to it. https://myasthenia.org/mgfa-events-webinars/national-patient-conference/

myasthenia.org

National Patient Conference | Myasthenia Gravis Foundation of America

This annual event brings together people living with myasthenia gravis, care partners, family members, and leading MG experts.

[shawna-barnes]

Thank you for sharing the link!

[Jessica]

I only went to one the one in tampa but attended others including Phoenix virtually. It was nice meeting people like me as I am always texting to my members from my FB site and here, and talking on virtual support groups. The first morning you were completely on your own as only specific volunteers had groups ( I am a volunteer but not a group leader so I could not attend which I totally disagreed with that should not been included or at the end.) the speakers unfortunately pretty much said the same thing in every seminar unlike the previous seminars, one seminar i hadnt a clue what it was even about, and the only other seminar that was memorable was how to fund raise for MGFA. All the rewards were for people who made the most fund raising not for the true leaders and volunteers like the ones who do health fairs or virtual support groups,the different kiosks were interesting and I was able to speak to people about new drugs and studies which was great. They also had a few breakaway groups that were only 30 minutes each those I enjoyed but way too short.The Food was good the temperature,someone told them that MG patients can react to heat so it was freezing the first day. So all in all it was good, did I learn anything new,not from the speakers but if you were a newbie the MG 101 was great ( you can watch it on utube).I heard from others and the opinions were mixed. One person who goes to all the conferences had the same opinion. I think if all you come to a conference is for just for the speakers,stay at home and do it virtually or on utube a few days later. If you like meeting people and are social it is great. Expect to be alone alot though for meals and the evenings if you don’t come with anyone or know anyone. Hope that helps