Co-founder of Project A.L.S. says working across disciplines is the key.
Thank you, Oprah, for dumping a bucket of ice water over your head for ALS research. Thank you, Bill Gates, Mark Zuckerberg, Adam Levine, and Taylor Swift, for joining the tens of thousands of Americans who have taken the Ice Bucket Challenge, and raised millions for crucial brain disease research in the last two weeks.
Your self-inflicted ice baths have served as a major wake up call to the nation. Experts say that unless we commit ourselves now to aggressive, collaborative brain disease research, by the year 2025, a staggering 1 in 25 American adults will be diagnosed with ALS, or the closely related Alzheimer's or Parkinson's diseases. The truth is that soon you will know, dearly love or be someone with a brain disease that is poorly understood, and for which effective treatments and cures remain at a painful distance.
By accepting the Ice Bucket Challenge, the American people have launched the opening salvo in a war we can all agree on. This fight deserves the immediate attention and support of Congress, the president, and every citizen who cares about the health of our children and the future of our world. Unless we get together, aligned as one against brain disease, we will lose everything.
Brain diseases like ALS are complicated, mostly because the brain, as our executive operating system, is by far the most complicated organ. Our brains are responsible for instigating every movement and human memory. The good news today is that, like us, who have banded together through water and ice to take a stand, researchers and doctors are starting to work together on brain disease.
When my younger sister, Jenifer Estess, was diagnosed with ALS at age 35, scientists working on ALS traditionally received small individual grants. Other ALS non-profits were doing excellent work at the time, but mostly in the area of patient services. But no one, not even the government, made sure scientists worked together on ALS. In 1998, Jenifer, our sister Meredith, Julianne Hoffenberg, and I started Project A.L.S., a non-profit mission to recruit the world's best scientists, not only from ALS, but related disciplines like stem cell research, molecular biology, genetics, and clinical medicine, to bring their expertise and data to the table, and hold them accountable.
In 15 years, Project A.L.S. has tapped outstanding talent from leading research institutions like Harvard, Columbia, Johns Hopkins, Memorial Sloan Kettering Cancer Center, and the Salk Institute, and required that competitors work together toward shared research goals. Picture LeBron James, Carmelo Anthony, Kevin Durant, Kobe Bryant, and Chris Paul playing together for the NBA championship. Never happen? When it comes to brain diseases like ALS, this is precisely the kind of teamwork that has to happen.
As a result of intensive team efforts underway right now, Project A.L.S. and its partners are getting closer to identifying more genes, building more accurate models of human neurodegenerative disease, testing more drugs, and systematically unlocking the mysteries of brain diseases that will touch us all. As Jenifer said, "Life is not about letting go, but reaching." No time for a brain freeze here. Let's push scientists, doctors, drug companies -- and each other -- to give our best efforts in a war we must win.
Valerie Estess is co-founder and director of research at Project A.L.S.
In addition to its own editorials, USA TODAY publishes diverse opinions from outside writers, including our Board of Contributors. To read more columns like this, go to the opinion front page or follow us on twitter @USATopinion or Facebook.