Many of you have heard my story by now. In 2004, at the age of 29, I was diagnosed with ALS, also known as Lou Gehrig’s Disease. After months of sensing that something was not quite right with my body, that I was losing strength and control in a way that did not seem normal, my suspicions were confirmed: I was sick. Well, alright then. I had a name for my sickness, and now I needed to know what to do about it. I asked the doctors what my treatment would be and how soon I would recover. Surprised that I didn’t seem to understand the severity of my diagnosis, they said, “You won’t recover. You will almost certainly die within 5 years. There’s nothing we can do for you.”
I’ve done my research. I now understand just how cruel this disease is. I’ve learned that about 600,000 people worldwide are living with this disease – and even though the incidence of ALS is about the same as better-known diseases like MS and Huntington’s disease, patients die so quickly that there are never that many of us living with ALS at any given time. I’ve learned that even though we’ve known about this disease for more than 140 years, and even though it’s been more than 70 years since Lou Gehrig lent it his name, patients have no recourse, no hope. I’ve heard doctors tell patients that the only available treatment will extend life for a few months at best and will do nothing to improve their condition. Worst of all, I have personally witnessed ALS destroy my own body over the past several years, and I’ve been powerless to stop it.
As I learned more about this devastating disease, I found the current situation unacceptable. I knew that there had to be treatments and cures out there, and I believed that if we could help focus research on the most promising and most valuable avenues of exploration, we could make a big difference in the lives of people affected by ALS. With my classmates at Harvard Business School, I began asking ALS experts what their major obstacles were and what needed to be done to jump-start the discovery of meaningful treatments. Thus, Prize4Life was born.
In its almost three years of existence, Prize4Life has already become a major player in ALS. We’re funding two one million dollar prizes that each address significant research gaps. We’re collaborating with the Alzheimer Research Forum to build a web-based informational resource for ALS researchers. We continue to undertake projects to direct attention to the most pressing challenges ALS research faces and to build the infrastructural resources that will make it easier for researchers to enter the field and find what they need. I encourage you to take a look around our site to learn more about our programs. You can also help us celebrate our third birthday by making a contribution to our cause and signing our virtual guestbook.
This blog is one of our newest resources: we’ll be using this space to discuss what we at Prize4Life are up to, the latest news of relevance to ALS, and what you can do to help. You’ll see some regular entries from me as well as the rest of the Prize4Life staff, and we’ll also bring in some guest bloggers from other great organizations. Make sure to check back often and share your thoughts with us in the comments. We want to keep you informed as we steadily make progress in the fight against ALS – and I know we are nearing the day when ALS patients will never have to hear a doctor say, “I’m sorry. There is nothing medicine can do for you.”