My name is Steve Kolb. I'm a musician and teacher, who's founded two non-profits to help underserved children. Along the way, I've raised lots of money to support those efforts. My wife, Virginia, and I have been married for 28 years. We have two sons in their 20's.
Thirteen months ago, Virginia was diagnosed with ALS (Lou Gehrig's Disease), a disease with a life expectancy of 2-5 years. In the past year, she's lost most of her voice and hand function, as well as use of her right foot--she's had some bad falls. In spite of this, her spirits are positive--she starts each day with a smile.
Virginia's doctor, Merit Cudkowicz, is well-known as a leader in ALS research. A major breakthrough last year, the discovery of a gene defect shared by 34% of all U.S. ALS patients, has created the possibility of finding a treatment for this devastating disease. The first step is identifying ALS patients nationwide with this defect: a million dollar project! I want to use my fundraising experience to make this happen.
My goal is to raise the money needed to fund the larger fundraising project. $25,000 will empower a multi-site fundraising effort, joining the forces of families dealing with ALS in at least five national locations. I'm confident that, with your help, we'll be able to raise the money to do the ALS study. Your gift would be multiplied many times over.
$12,000 of the $25,000 will allow me to give up some of my other income and still be able to pay our bills and medical expenses. The rest is for supplies needed to put together the fundraising events. I already have some passionate volunteers in several states lining up to make these events happen. Other than covering my lost income, everyone involved with this project will be volunteers.
If the research moves ahead quickly enough, there may be benefits for Virginia and all the other ALS patients currently fighting this disease. If not, at least we'll be making something happen for the next generation.
Thanks so much for considering. Please don't hesitate to get in touch if you need more information.