Brad was diagnosed with amyotrophic lateral sclerosis (ALS, or Lou Gehrig's Disease). He had been experiencing weakness in his right leg for over two years and he was unable to walk without the aid of a cane. We still recall vividly how devastated we were when we received this terrible diagnosis. We were told that his prognosis was 2-4 years and that there was no treatment or cure for this disease. The disease would attack the voluntary muscles of his entire body. He would eventually lose the ability to walk, lose the use of his arms and hands, and finally lose the ability to eat, talk, or breathe. We were completely overwhelmed when we received the news. Our first inclination was to cry, our second thought was that our life as we knew it was over. Nearly 30,000 people in the U.S. and approximately 450,000 around the world are fighting ALS right now. Every 90 minutes someone is diagnosed with ALS in the US.
On April 27, 2010 we lost Brad to this terrible disease. At the time, he was a quadriplegic confined to a wheelchair, using a feeding tube and needing the assistance of an external ventilator 24 hours a day. He required 24-hour care but could still communicate through the mask that he wore for the ventilator. He spent most of his time in the company of family and friends. Brad felt truly blessed to be loved and cared for by so many people.
In November of 2006, we met an amazing man named Augie Nieto, who also has ALS and now serves as the Chairman of the Board of Directors for the ALS Therapy Development Institute (ALS TDI). Augie has also committed personally to raise funds in support of an aggressive research program focused on finding the causes, treatments, and cures for this disease. He and ALS TDI have made a combined contribution of nearly $100 million since 2007. His work to put an end to this terrible disease is now known as Augie's Quest. All of the funds raised by Augie's Quest go directly to pay for research conducted at the ALS Therapy Development Institute. ALS TDI is the world’s largest ALS-dedicated drug discovery organization. The sole mission of this nonprofit biotech is to discover and develop effective treatments to end ALS as quickly as possible. The efforts of Augie’s Quest have critically impacted several innovative research programs at ALS TDI, including the sponsorship of a currently enrolled clinical trial, two other potential candidates in clinical development, and the launch of a personalized medicine initiative utilizing stem cell lines created from people living with ALS to rapidly screen thousands of compounds.
Every dollar we raise will go directly to ALS TDI for research, with no overhead expenses for fund raising efforts being attached. We hope that you consider becoming a sponsor and joining us! Our family, and thousands of others who are praying for a cure, will be eternally grateful. We hope to hear from you soon, and thank you so much for your friendship and support.
- Suzanne Bennett and Brett Bennett, event co-chairs