kkbward
10-07-2004, 05:11 PM
Greetings from Colorado from a soul who wishes he was on boat enjoying the blitz. Unfortunately life will not allow me to make the trip this year. Please have a look at the info below about an upcoming event I for which hope you would like to participate.
In August of this year, we found out our one year old son has an extremely rare genetic brain disorder called Canavan's disease. It is a horrible disease that causes the white matter of the brain to be destroyed. Vincent will never walk or talk and will be severely disabled. He will likely not see his 10th birthday and some of these kids die even sooner.
Luckily, relatively speaking, our son is a very functional Canavan kid so far. We have been spared a great deal of the sleeping and eating problems that most of these kids have and he has not had any seizures yet. He is actually a very happy and responsive kid right now and he really just resembles a gigantic newborn.
Although there is no cure for this disease, there is a highly experimental gene therapy trial going on in Camden NJ that provides some hope in adding significant quality of life for him. Also, the work being done in this trial could be revolutionary in the treatment of all kinds of brain disorders including Parkinson's, MS and Alzheimer’s.
Much of the $300k cost for Vinny is covered through an NIH grant, but a considerable portion of the costs ($20k+) is not covered and must be paid for through fundraising efforts.
So here I am, I have no idea how to raise money for such a purpose. I figured I would start with something I do claim to know a thing or two about. A couple of weeks ago, I posted to the FlyFisherman.com RM board to try and get some ideas on what might be an effective fundraiser involving fly fishing. I got an amazing response with dozens of folks volunteering themselves to help.
I come to this group asking for your support in our benefit fly swap. More info can be found here: http://home.comcast.net/~kkbward1/fly_tying_benefit.htm
(please excuse my very rough web-site, please have a look around though)
But the overall concept is to ask folks to donate a dozen hand-tied freshwater flies (or a half dozen salt patterns) and then we will offer packages that will be sent out to folks who donate at least $20 to help with medical expenses for my son. We will send 12 fresh and 6 salt patterns to anyone who sends in at least $20. Please have look at the site for details.
Please let me know if you would be interested in joining us. I think it is going to be a lot of fun and a great way to raise money. Thank you very much for reading!!!!
Brian Warden
Windsor, CO
--Administrator-- If this post is deemed inappropriate for this message board, I sincerely apologize and if removed I will not post again.
In August of this year, we found out our one year old son has an extremely rare genetic brain disorder called Canavan's disease. It is a horrible disease that causes the white matter of the brain to be destroyed. Vincent will never walk or talk and will be severely disabled. He will likely not see his 10th birthday and some of these kids die even sooner.
Luckily, relatively speaking, our son is a very functional Canavan kid so far. We have been spared a great deal of the sleeping and eating problems that most of these kids have and he has not had any seizures yet. He is actually a very happy and responsive kid right now and he really just resembles a gigantic newborn.
Although there is no cure for this disease, there is a highly experimental gene therapy trial going on in Camden NJ that provides some hope in adding significant quality of life for him. Also, the work being done in this trial could be revolutionary in the treatment of all kinds of brain disorders including Parkinson's, MS and Alzheimer’s.
Much of the $300k cost for Vinny is covered through an NIH grant, but a considerable portion of the costs ($20k+) is not covered and must be paid for through fundraising efforts.
So here I am, I have no idea how to raise money for such a purpose. I figured I would start with something I do claim to know a thing or two about. A couple of weeks ago, I posted to the FlyFisherman.com RM board to try and get some ideas on what might be an effective fundraiser involving fly fishing. I got an amazing response with dozens of folks volunteering themselves to help.
I come to this group asking for your support in our benefit fly swap. More info can be found here: http://home.comcast.net/~kkbward1/fly_tying_benefit.htm
(please excuse my very rough web-site, please have a look around though)
But the overall concept is to ask folks to donate a dozen hand-tied freshwater flies (or a half dozen salt patterns) and then we will offer packages that will be sent out to folks who donate at least $20 to help with medical expenses for my son. We will send 12 fresh and 6 salt patterns to anyone who sends in at least $20. Please have look at the site for details.
Please let me know if you would be interested in joining us. I think it is going to be a lot of fun and a great way to raise money. Thank you very much for reading!!!!
Brian Warden
Windsor, CO
--Administrator-- If this post is deemed inappropriate for this message board, I sincerely apologize and if removed I will not post again.