#mgfa

[nezumiko]

Will you sponsor me on my walk roll to raise funds for the MGFA for myasthenia gravis research and patient support? I’m actually this year’s “Walk Hero” — basically the poster child for the Portland walk.

You probably know I was in the hospital again in August with a bad flare of Myasthenia Gravis.

"Myasthe—what? Is that some kind of Pokéman?" you may ask, but no. It's a rare, disabling autoimmune disease of the neuromuscular junction.

Myasthenia gravis means "grave muscle weakness" and that's exactly what it causes. When I'm in a flare, I can't walk or even stand; my head is too heavy to hold up; my eyelids fall half-shut; my speech slurs as if I'd been drinking for a week straight; I can't chew solid food or swallow thin liquids; and I can't get a good breath without help from an external ventilator.

It's the reason for the stairlift in our house, my magnificent purple wheelchair, my stylish forearm crutches, my bedside bipap ventilator, and my five not-so-spa-like "vacations" at the hospital over the last two years.

It's also the reason my friends and family 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 29, 2018, our team, "Motionally Challenged" will walk and roll, rain or shine, along with dozens of other teams of patients, friends, family members and caregivers, 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 and a half 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, mortality 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 an easy way you can help! Please make a pledge to help me reach my goal. Any little bit counts, even just a single dollar, and 75% of the proceeds will go directly into research. Here's a look at how the money we raise will be used.

@saunterleftside is walking with us, and he needs sponsors, too. If you're in the PNW and want to walk with us, we'd love to have you join our team or come cheer us on!

It sounds cliché, but it's true: together we can make a difference!

[nezumiko]

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 @saunterleftside 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!

[nezumiko]

Stretch Goal! Sponsor us in the MGFA Walk

Thank you to everyone who has helped spread the word or pledged already to support @saunterleftside and me in the MGFA Walk on Saturday, September 30. Your generosity and support are overwhelming, and we appreciate you so much! Because we really believe in this organization, and in all of our friends and loved ones, we've decided to make a stretch goal for our team. 

@saunterleftside hasn't gotten any pledges yet, but he'll be the one doing the actual walking! I'll be cruising along in the comfort of my wheelchair while he has to actually break a sweat.

If you haven't already, please consider making a pledge to either or both of us. Every little bit counts. For less than the price of a venti pumpkin spice late, you could get us $5 closer to our goal, and the MGFA $5 closer to a cure for myasthenia gravis. And if you can’t donate, that’s okay, too. Just cheer for us, and help signal boost if you can.

Ryan's page

Zach's page

[sacredinkedblood]

YourQuote Baba Jencie Arnold #sacredinkedblood God 's Girl #trending #MGFA #love #god #quote Read my thoughts on @YourQuoteApp #yourquote #quote #stories #qotd #quoteoftheday #wordporn #quotestagram #wordswag #wordsofwisdom #inspirationalquotes #writeaway #thoughts #poetry #instawriters #writersofinstagram #writersofig #writersofindia #igwriters #igwritersclub (at Author Ven J. Arnold) https://www.instagram.com/p/B3khpAlnJTp/?igshid=1ns4dhp9us8db

[fifiduboisdq]

Throwback Thursday to this phot series from MGFA by @thehollylouya ! Thanks @theonlycocomontrese and @kori_stevens for having me! 😝😋😛😝😜🤪😋😛😝😜🤪 #nyc #dragqueensofinstagram #missgayamerica #mga #mgfa #entertainer #drag #dragqueen #burlesque #costumedesign #hamburgermarys #hamburgermarysbrandon #mgwsa #missgaywesternstatesamerica (at Hamburger Mary's Brandon) https://www.instagram.com/p/BnH4LFBgxyI/?utm_source=ig_tumblr_share&igshid=172dydfr5m2vs

[bibliophilemrh]

Recognized at the #MGFA Awards Dinner??!! I've been thinking about going to the MGFA conference since it's so close to home this year. This letter has me thinking a little harder about attending. #MyastheniaGravis #MG #IhaveheardofMG

[mitchell-giddings]

Christine Triebert’s portrait series, “Through a Glass Dimly” opening reception tomorrow Thursday, October 1, 5 - 7:30pm

[mitchell-giddings]

Shaun Wright, Presidio County, Texas, 2009, photograph, 17.5″h x 22″w

Malcolm Wright, Two Figures, bronze cast by Jay Lindsay, Photograph by John Polak, 26h x 12.5w x 7d

Petria Mitchell, Lavender Sunrise, oil on canvas, 36″h x 36″w