Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Have any members of this group ever attended the Myasthenia Gravis Foundation's National Conference? If so, what was your experience? Was it helpful in educating you and offering hope about current research, or was it oriented primarily for medical professionals?
Thanks for any feedback.
Hope
Thanks for any feedback.
Hope
National MGFA Conference~A Trip Worth Making
A personal experience~ By Beth Nordhausen
The National MGFA conference to me seemed a bit intimidating, but that was
before I went! I am a stay-at-home mother of three in a small New England town,
and trips into Boston on my own are about the extent of my solo traveling. When
the National MGFA 2013 conference was brought to my attention, my desire to go
and learn as much as I could about the disease and meet others around the country
with MG was stifled by my I have no business being at a national conference in
Miami, I have a family to take care of thoughts. I looked at the speaker line-up on
the national MGFA website, and looked at airline flights, and decided that this was
a trip I needed to make. I have a 7 year old daughter with MG and I was hoping
that the national conference was a forum for me to learn about the disease, meet
other people and form a national network of support.
The conference was everything I hoped for and more. First off, the speakers
were amazing. The days were packed with informative speakers about the latest
research, treatments, and drug trials. Neil C. Porter, MD from the University of
Maryland started with a basic overview of the disease. Don Sanders, MD from
Duke University Medical Center presented about future treatment options for MG.
Michael Benatar, MD, PhD from the University of Miami discussed in detail the
current treatments for MG. These were only a few of the detailed medical
presentations given. The presentations always concluded with a question and answer
session. How lucky to be able to talk openly with some of the best MG Doctors in
the country! Other speakers included people with MG, sharing their story, and
offering their support. We were also given the opportunity to split up into smaller
groups; I was lucky to join the Parenting a Child with MG group. A pediatric MG
neurologist lead this group, but it was mostly a chance for parents to talk, share
stories and give each other support. Support that we all needed.
I met some truly amazing people at the conference, people I now call
friends. Many who have had MG for years, many who were newly diagnosed, many
caregivers and spouses, and even a few other moms like me. People from all over
the country are now part of my MG family. MG is such a different disease that is
different for everyone, so being able to learn everything I can about it from as
many different people as I can helps me to help my little girl. The MG conference
helped to expand my knowledge of the disease, helped me to network, helped me to
be hopeful and most importantly expanded my MG Family. It was a trip worth
taking!
Annette
So worth going we hope to go this year, just have to see. Or as I usually say Lord wiling and the creek don't rise.
Dear Hope; Do you know where it is this yr? I couldn't find it on the MGA website?Sorry my eyes might have missed it?!
Dan
http://www.myasthenia.org/
This year's conference is in Philadelphia, from April 16 - 18. This is the week leading up to Easter, so some people may have Friday off.
Hope
Judith
Hope