Seventeen months ago, suddenly and without warning, I could no longer walk my dog more than 100 feet without stopping to catch my breath.
I couldn’t raise my arms above my shoulders.
I couldn’t lift more than 10 pounds without struggling.
I couldn’t climb a flight of stairs.
Off and on I experienced double vision, and had trouble chewing and swallowing.
I felt that I had aged 30 years in a matter of days. And I was scared.
So began my journey for a diagnosis, aided by some of the best doctors in the world at New York University’s Langone Medical Center.
My search ended several months later when I learned I had an incurable disease I had never heard of, couldn’t pronounce and couldn’t spell --- myasthenia gravis, a “grave muscle disease” affecting the body’s voluntary muscles. That includes weakness in the arms and legs, eyes, mouth, throat, swallowing and breathing muscles. Patients with severe cases can wind up hospitalized and unable to breathe and yes, it can result in death.
Since that frightening introduction to “MG” I’ve been fortunate to have an excellent support system of doctors, wonderful family and friends and the Myasthenia Gravis Foundation of America (MGFA).
MGFA’s mission is to educate and counsel us, work with and support doctors and researchers looking for a cure and effective treatments and helping spread information about this rare and often undiagnosed disease.
The prevalence of MG in the United States is estimated to be about 20 per 100,000 population. However, MG is probably under-diagnosed and because its symptoms are often confused with other, more common ailments, it sometimes goes undiagnosed properly for months or even years.
Today my treatments seem to be holding MG at bay, and for that I’m grateful. But others are not so fortunate. They don’t know they have MG, or if they do, they may be treated by doctors who have never encountered it and don’t know how to treat it properly.
To help MGFA raise funds for research, awareness and patient support, I recently joined the MGFA board and am committed to raising funds to support their vital mission.
MFGA funding is making a difference. It’s paying for the first MG patient registry, which is helping pharmaceutical companies develop and test potential new drugs. Late last year the FDA approved the first new drug in 62 years to treat MG!
This June I’m walking to raise awareness and money during the Tri-State MG walk in Queens, New York City. I’d be honored if you would consider supporting me, my team and MGFA by making a tax-deductible donation online.
Please help MGFA find a cure and raise awareness of this debilitating disease.
If you’d prefer to donate by mail please send your check, made out to MGWalk to me at
280 Park Ave S #10M
New York NY 10010-6130