SLAM!
Requesting Help With Duchenne Research
I've been posting this everywhere lately so I might as well post it on here as well...
I was hoping some of you might like to donate to our fundraising page for Duchenne muscular dystrophy (DMD). A couple of weeks ago my wife, Gina, and I announced that we are pregnant with our second son, who is due in late February. We also made it known that, while we are very excited about his impending arrival, we were also anxiously awaiting DNA test results that would let us know if he tests positive for Duchenne. Gina is a carrier of DMD and two of her brothers were born with the disease (one is still alive). Any boy she gives birth to has a 50/50 chance of having the disease, and girls have a 50/50 chance of being a carrier. The testing had been taking an extremely long time — over ten weeks — due to problems with the lab (Athena Diagnostics). Finally, last Friday, we received word that the baby did indeed test positive for DMD. We were devastated by the news and are still trying to come to terms for what it means for our family and the baby's future. Needless to say, we would appreciate support from those we know, either in real life or vicariously on the Web, during this difficult time. We have set up a fundraising page through an organization called Parent Project Muscular Dystrophy that specifically targets Duchenne, and while we realize times are tough, we'd appreciate it if you could please take a few minutes to visit the page, read more about it, and make a donation if you can:
http://www.parentprojectmd.org/goto/kopp
Duchenne is a degenerative genetic disease that affects one in 3,500 boys. It is the most common form of muscular dystrophy, and there is no cure. This disorder involves rapidly worsening muscle weakness. Boys born with the disease typically start having problems before age six with weakening muscles in the legs, pelvis, arms, neck and other areas of the body, causing difficulty with running, hopping, and jumping, frequent falls, and the ability to walk may be completely lost by age twelve. Death usually occurs by age 25, typically from lung disorders. Treatment for DMD (usually involving steroids, which has significant side effects) aims to control symptoms to maximize quality of life. Gene therapy may become available in the future.
This has been a rough few months for us. But I'm hoping that with your generosity as well as continued ad sales on the GaragePunk Hideout that we can continue to raise lots of money to fund research to improve the lives of our son and other boys with Duchenne. All we can do is hope.
Also, if you'd like to keep up with news and information regarding Duchenne muscular dystrophy, please follow @Duchenne_MD on Twitter.
Thank you so much for your time, compassion, and generosity.
I was hoping some of you might like to donate to our fundraising page for Duchenne muscular dystrophy (DMD). A couple of weeks ago my wife, Gina, and I announced that we are pregnant with our second son, who is due in late February. We also made it known that, while we are very excited about his impending arrival, we were also anxiously awaiting DNA test results that would let us know if he tests positive for Duchenne. Gina is a carrier of DMD and two of her brothers were born with the disease (one is still alive). Any boy she gives birth to has a 50/50 chance of having the disease, and girls have a 50/50 chance of being a carrier. The testing had been taking an extremely long time — over ten weeks — due to problems with the lab (Athena Diagnostics). Finally, last Friday, we received word that the baby did indeed test positive for DMD. We were devastated by the news and are still trying to come to terms for what it means for our family and the baby's future. Needless to say, we would appreciate support from those we know, either in real life or vicariously on the Web, during this difficult time. We have set up a fundraising page through an organization called Parent Project Muscular Dystrophy that specifically targets Duchenne, and while we realize times are tough, we'd appreciate it if you could please take a few minutes to visit the page, read more about it, and make a donation if you can:
http://www.parentprojectmd.org/goto/kopp
Duchenne is a degenerative genetic disease that affects one in 3,500 boys. It is the most common form of muscular dystrophy, and there is no cure. This disorder involves rapidly worsening muscle weakness. Boys born with the disease typically start having problems before age six with weakening muscles in the legs, pelvis, arms, neck and other areas of the body, causing difficulty with running, hopping, and jumping, frequent falls, and the ability to walk may be completely lost by age twelve. Death usually occurs by age 25, typically from lung disorders. Treatment for DMD (usually involving steroids, which has significant side effects) aims to control symptoms to maximize quality of life. Gene therapy may become available in the future.
This has been a rough few months for us. But I'm hoping that with your generosity as well as continued ad sales on the GaragePunk Hideout that we can continue to raise lots of money to fund research to improve the lives of our son and other boys with Duchenne. All we can do is hope.
Also, if you'd like to keep up with news and information regarding Duchenne muscular dystrophy, please follow @Duchenne_MD on Twitter.
Thank you so much for your time, compassion, and generosity.
Add a Comment
About
Latest Activity
318 auto car contact 636-244-1221 thanks
Badge
© 2009 Created by kopper on Ning. Create a Ning Network!
You need to be a member of St. Louis Area Mopars to add comments!
Join this Ning Network