STRETCH GOAL! Thank you to everyone who helped me meet my original goal. With less than a week to go before the walk, I've decided to make a stretch goal. Can you help team Motionally Challenged make it to $1000? Ryan's page, especially, could use some love.
Myasthenia gravis — is that a rare disease or a Pokéman?
It means "grave muscle weakness" and that's exactly what it causes. It's the reason for the stairlift in our house, my magnificent purple wheelchair, my stylish forearm crutches, my bedside bipap ventilator, and my four not-so-spa-like "vacations" at the hospital over the last year and a half.
It's also the reason Ryan and I are walking (okay, let's be honest, I'll be rolling, but it counts!) in the upcoming Myasthenia Gravis Foundation of America (MGFA) Portland MG Walk. On September 30, our team of two, "Motionally Challenged" will walk and roll, rain or shine, along wth dozens of other teams of patients, friends, family members and caregivers from the all over Pacific Northwest area, to raise money for the MGFA.
The MGFA is the only national volunteer health agency in the United States dedicated solely to the fight against myasthenia gravis. MGFA is committed to finding a cure for myasthenia gravis and closely related disorders, improving treatment options, and providing information and support to people with myasthenia gravis through research, education, community programs, and advocacy.
The MGFA has personally helped me in so many ways in the two years since my diagnosis. I've learned coping strategies, met dozens of other patients like me, and formed lasting friendships through MGFA-sponsored support communities.
Until the mid-20th century, MG was often a death sentence, with a 70% mortality rate. Thanks to research supported in part by the MGFA and the Muscular Dystrophy Association, that has fallen to less than 5%, and new treatments are in the pipeline.
When someone you care about has a chronic, disabling illness, there is often little you can do besides offer sympathy, but there is a way you can help! Please make a pledge to help me reach my goal. Any little bit counts, and 75% of the proceeds will go directly into research. Here's a look at how the money we raise will be used.
If you're in the PNW and want to walk with us, we'd love to have you join our team, too!
It sounds cliché, but it's true: together we can make a difference!