Gofundme for myotonic muscular dystrophy advocacy in D.C.

spddrcr

spddrcr

NEED DECALS? PM ME!!!!
http://www.gofundme.com/94xc9o

so, my wife was asked to lead a seminar on care giving and care givers at the Myotonic muscular dystrophy foundations national conference in Washington DC this September. she originally agreed at the beginning of this year and things were going well until on June 10th as i was picking up one of my sons from his last day of school my other son and i were involved in a car accident which left me with another broken ankle and a jacked up knee that now has to be fixed. we had saved every little bit we could for this trip as it is a huge undertaking with my disease at the point that it is ( myotonic muscular dystrophy) and we won't ever have the opportunity to do something like this again while i am healthy enough to do it.
unfortunately My van was totaled in the accident and it cost us quite a bit to weather through the storm after the accident. luckily my son wasn't hurt in the accident.

our family will also have the opportunity to visit Capitol Hill on September 12th and meet with Congressional leaders to share what it is like to live with a life changing neruromuscular disease and get to advocate for the MDA CARE Act.
this is very important to me as the human trials for the drug to reverse the type of MMD i have is kinda dependent on the MDA care act. if passed they will be able to include more people in the trials. this drug would basically allow me to live out a full life and reverse the ongoing muscle wasting that i am going through and to be able to go back to work and life like a normal person.

I normally wouldn't solicit for funds for this kind of thing, but it is really important to me and my family per the reason for the gofundme.

any amount will help, I also have some paracord bow slings for sale as well as paracord bracelets and various jewelry i make.
I have been a member on B.A.R.F. almost since the beginning and have helped many people here with minor bike problems to picking people up after accidents when i had my truck back in the days.
I know many of the older members here can vouch for me.

the gofundme page with more info can be found at: http://www.gofundme.com/94xc9o along with more info on the trip to DC.
if someone wants any of the paracord stuff or jewelry make a donation and send me a PM as to what you are looking for. I also still have a bike for sale that someone might be interested in, just send me a pm or ask any questions here.
thanks in advanced
Aaron Korsgaard
AKA spddrcr
 
byke

byke

Well-known member
Donation sent. I did a little googling on the MD Care Act, looks like it was something approved in 2001, but has since disappeared? What happened?
 
spddrcr

spddrcr

NEED DECALS? PM ME!!!!
it was implemented in 2001 and was reauthorized in 2008. in 2001 centers were set up for treatment and therapeutic use, the problem was no one had a clue what actually caused it or if it could be treated. the technology has come full circle. here is a link to info on the new drug trial that is about to go into the human testing phase:
http://quest.mda.org/news/mmd1-antisense-drug-moves-human-testing

and you can find info here about the origins of the MDA act and what changes we are trying to get pushed through. it's probably easier then me trying to explain it:laughing
http://www.myotonic.org/node/584



to tell you the truth i never payed attention to what was happening in my family as i never got along with my parents. I was diagnosed through DNA testing in 2003 after a bad moto accident, although i grew up and watched my father die due to complications from MMD 2 years ago it's only now i am starting to understand the daily frustration he went through. out of all of my parents children (4 of them) i was the only one who got it. one of my son's has tested negative and the other one has not been tested due to it being a late onset disease(usually lates 20's). the second he gets tested and if it turns out to be a positive (50/50 chance:nchantr) he losses the ability to get life insurance and many other opportunities. the hope is that the new treatment will make it so that i will never have to worry about my son getting the disease.

thank you so much for the donation, it really means a lot to my family and I.
 
spddrcr

spddrcr

NEED DECALS? PM ME!!!!
just one more week to go, I again want to thank those who have donated and ask anyone who can spare anything to please help. I have never asked for anything from anyone and this whole experience is very humbling for me to say the very least.
 
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