By now most of you know that I have myasthenia gravis. This time last month, I was in Raleigh NC attending my first national conference for the Myasthenia Gravis Foundation of America. My mom flew out a few days early to be here in time for the South Carolina MG Walk (our first walk was last year, you can read more about that here).
The next day we made the drive to Raleigh (through some torrential rain). Words can’t really do justice for what the few days I spent at the conference were like. Myasthenia is a rare disease, and there are only about 100,000 of us in the United States. To be in a room filled with patients and caregivers with leading experts was really an incredible experience. I am so thankful for all the hard work the MGFA has put in to providing resources for patients and caregivers – and our new CEO is an amazing woman who has MG herself.
Our first night, my mom and I checked in to the hotel and had some of the best chicken and waffles ever (which fantastic draft hard cider too) at Beasley’s Chicken + Honey and got ourselves ready for the conference schedule. The next two days were packed full of research presentations, panels, clinical updates, and even a night of MG Bingo with Dr. Neil Porter. I wish I hadn’t waited so long to really get involved with the MGFA.
My time at the MGFA conference helped me see the need to continually be committed to raising awareness and funds for the programs that this organization provides. They operate on a small budget due to lack of name recognition and the rarity of the disease. But they provide support groups across the country, research grants, information for patients and caregivers, and are on the front lines of improving patient quality of life.
This year I have been inspired to organize what will be an annual fundraising effort to benefit the MGFA. I have partnered with several artists to host a fundraising/awareness art and handmade auction in June, during our awareness month. We have some artists participating who have MG, and many who do not, but know the importance of this effort. I invite you to join our group by clicking on the link at the top of my blog “Art + Handmade Auction for MG”. It will take place on Facebook June 24-27.