mega_option101

Although, I do not physically know anyone who has this disease, it has a very special place in my heart as well. I am starting my Honors Project (One Year Project) next year working in a Laboratory at my University (Ottawa U) in order to complete my Double Major in Biochemistry.

This Laboratory is funded by the US MDA along with others. For information about this:

http://www.medecine.uottawa.ca/bmi/eng/skerjanc.htm

Cheers for bringing this up

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Mr. Stroker

I forgot all about OCN Cares . I would love to see this help a fellow OCN member and others with his condition.

Thanks for getting me choked up.

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moward

This is a good cause, my older brother had Duchenne MD, the suffering he went through was terrible.

Interpolation

5111 and still rising.

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Xibalba

Some great work done by the MDA. Too many touching stories in here for me.. hope they get the monthly donation


Thanks, for this - A new boinc project to add to the rig now

SPEEDemon

I've been lurking a while a enjoying some of the amazing rigs posted in the gallery section(really helps pass away those long nights). Anyways, I saw this post and was ecstatic to read it, and figured this was as good a time as any to register.

I too have a form of Muscular Dystrophy, specifically Charcot Marie Tooth disease, just like the OP. Unfortunately I have a very rare and severe/rapidly progressive form of CMT. I've been using a wheelchair since elementary school, had numerous surgeries including a spinal fusion. Due to the progression of the disease only the spinal fusion actually took of all the surgeries, but I' can't be blamed for trying ;-). CMT recently took my ability to swallow food and breath at night, but as long as I can still use my computer I am happy.

The MDA has been great to me and my family. In addition to me, my father, my oldest brother, and my youngest brother have CMT. While they don't have it quite as severe as I do, it still greatly impacts our lives. MDA was with my family straight from the beginning as soon as we were diagnosed. They helped pay for legs braces, physical therapy, flu shots, etc. They even payed for a large portion of my $25,000 wheelchair years ago when my then insurance company refused to pay a single penny of it. Most of all, the MDA sent me to camp every summer since I was 10, last year(age 19) was my last year as they decided to change the age limits for camp. My camp experience can not be described in words. It was really the only thing that kept me going all this time. While I have had the majority of my friends pass away due to MD, and knowing that my time is limited, I wouldn't change anything, it has made me the person I am today. I applaud those who want the donation made to MDA, it is going to a very worthy organization.

Because this is my first post, I'll describe myself a little. I am currently a junior at the University of New Hampshire majoring in Mechanical Engineering with a focus on computers and mobility equipment. Along with working on my computer I like to modify my wheelchair(I'll post some pics of both later this week), these are the only two things that keep me from going insane from boredom. I also play power soccer for UNH. Unfortunately due to the progression of my disease I might have to leave school soon, but I'll probably die before I am forced to leave this place entirely(I love it here). I have two of the worlds greatest aids who are basically my arms and legs. Despite them not knowing anything about computers, I can direct them on what to do and together we can build a computer in a few hours.

Just like the poster I rarely share this information on forums, but I felt like it needed to be discussed.

jtypin

Wow speed...

I am very glad you can share you're story with us and it shall be discussed if you wish eh!

I would love to see your wheelchair "Modifications", sounds interesting. Does it include turbo?

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Valicious

It's really great to hear from you speed Mechanical engineering scares me, I have a friend from high school doing that....I'll stick with my business management so as to not melt my brain.
I think I need to create a Wheelchair Enthusiast group here on OCN. I've been trying to figure out how to add one of those electric golf cart motors (the kind that can go 40mph) for the longest time.

And yes, insurance companies (and the vast majority of the powerchair industry) suck
+rep for a touching story. If nothing else- CMT teaches us to be survivors, both mentally and emotionally.

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azcrazy

wow , there is alot of things to learn still, VAL and SPEED thanks for sharing with us

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wildfire99

bump, i had a friend with the bad kind of MD as a kid. it was very sad seeing his condition deteriorate, VERY sad. +1 donate point ^_^

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