Dear friends and family,
On July 6th 2005 our son Carson, then 3 years old, was diagnosed with Duchenne Muscular Dystrophy -- a form of Muscular Dystrophy that only affects boys. Since Carson’s diagnosis, Rick and I have learned all we can about our son’s disease and about all the medical research that is being done to seek a cure for this terrible disease. We have recently found out that Carson’s form of Muscular Dystrophy is due to a duplication of the Exxon sequencing in his DNA. Of the three causes for Duchenne Muscular Dystrophy, this is the rarest, affecting only 6% of all Duchenne boys.
Unbelievably, our son has a terrible disease and, even more unbelievably, he has the rarest form of it. Because of the rarity of its occurrence, research funding to find a cure for the specific form of Muscular Dystrophy that Carson has is very limited. This limited funding is not sufficient to do the research needed to find a cure for the disease our son is faced with.
Recently we were heartened to learn from Carson’s doctor that researchers at the University of Utah are working on a possible treatment for the specific form of Duchenne Muscular Dystrophy that our son has. Unfortunately, research is going “very” slow due to the lack of funding.
We contacted the University of Utah and found that it would cost only $50,000 to support research for one year. Only $50,000! Rick and I decided that, as parents, we have no choice but to try to raise that money so that researchers can go full steam ahead to find a cure for our little guy.
This is where we desperately need your help.
We thought it would be great to start a fund-raising chain beginning with all our friends and family. With this chain we can all link together to find a cure for Carson and the other boys that are just like him. There are a couple of things we want to ask of you.
1st please take at least 10 copies of this letter and send it to 10 people you know can help.
2nd If only 1000 of us donate only $50, we can quickly reach our goal of $50,000 to fund a laboratory scientist with the materials needed to conduct full time research on Carson’s form of Duchenne Muscular Dystrophy. This important research is necessary to find a cure for this terrible disease, or at least to stop its progression in boys with a duplication of the Exxon genetic sequencing. We are buying precious time since this disease will eventually affect our son’s heart and lungs and then it will take his life much too soon.
We desperately need this research to happen right now! In order to apply for grants to continue research in future years, we must present a full year of research to the FDA. We know that with all of you we can accomplish this goal if we all link together. Please remember that any amount you can donate is very much appreciated. Any amount! A single dollar will bring us that much closer to finding a cure.
Here is a little information on what Carson is faced with:
Duchenne muscular dystrophy (DMD) is the most common, lethal, genetic disorder diagnosed in childhood. It affects approximately 1 in 3,500 boys worldwide. DMD knows no boundaries and crosses into all cultures and races. DMD is a progressive muscle disorder for which there is currently no treatment or cure. Boys diagnosed with DMD typically lose the ability to walk between the ages of 7 and 13. They lose upper body function in their teens and sadly, most will lose the battle to DMD in their early twenties. These boys struggle every day with the little things we all take for granted like running, climbing stairs or simply getting up off the floor.
Carson is now 4 years old. He is still able to walk, but with obvious difficulty. Rick and I feel right now that we are fighting time trying to keep Carson walking as long as we can until researchers find something to stop the progression. The only thing stopping that from happening, sadly, is funds. We desperately need all of your help so we can find this treatment before Carson, or any other boy for that matter, goes into a wheelchair. We know that they will never be able to reverse the effects. We are just hoping to stop it right now and we cannot do it without all of you!
Please copy this letter and send it to at least 10 of your friends and family members, and ask them to do the same. Please know that we will gratefully accept any donation. Every dollar brings us close to our goal. Every dollar gives us hope. We just want you to be a part of our chain to keep our son Carson and any other boy affected by this heartbreaking disease healthy and as strong as possible.
Please make checks or money orders out to the University of Utah, Department of Human Genetics. The US 501 (c)(3) Non Profit Tax ID number is 87-6000525. Please mail your tax deductible donation to Cure for Carson, P.O. Box 533, Riverton, UT 84065-0533. Rick and I will make sure the donations go directly to the lab that will be working with us to find a cure. You will receive acknowledgement of your tax-deductible donation directly from the University of Utah. And, remember to ask if your employer will match your donation.
We want to thank all of you for being a part of our lives in one way or another. And we thank you for your support in finding a cure for Carson!
We love each and every one of you!
Love,
Kori and Rick Mc Intyre
www.cureforcarson.com
