Beyond the Ice Bucket Challenge: What's really shocking about ALS

The author's sister Jenifer Estess is pictured above. A co-founder of Project A.L.S. she revolutionized ALS research and later died of the disease.

The author's sister Jenifer Estess is pictured above. A co-founder of Project A.L.S. she revolutionized ALS research and later died of the disease.

By the year 2025, one in every 25 American adults will be diagnosed with ALS, Parkinson’s, or Alzheimer’s.

If you think that taking the Ice Bucket Challenge is a shock to the system, please consider the following fact: Soon we will all know someone—or be the person--with one of these devastating brain disorders. Experts agree that unless we declare war on ALS, Parkinson’s, and Alzheimer’s, these neurodegenerative diseases, as they are known, will become a global health crisis.

I know the devastation of brain disease first hand. My sister, Jenifer Estess, was diagnosed with ALS, seemingly out of nowhere, at age 35. We started Project A.L.S. together, as a family, with our friends, because we wanted more results from medical research.


You may not want to think about brain disease right now. Today’s headlines scream of urgent issues critical to our future. But, thanks to the Ice Bucket Challenge for ALS, begun by Boston area baseball player Peter Frates, and resulting in the social media tidal wave that has boosted charitable giving to ALS research exponentially, we are also forced to consider the next great challenge before us: As our population ages, more of us will be diagnosed with neurodegenerative diseases. That includes our children, parents, friends, our favorite celebrities and business leaders…and ALS doctors.

Watch Ben Stiller and Christine Taylor take the ice bucket challenge for Project A.L.S. 

These diseases are incurable. At best, they are profoundly debilitating; at worst, fatal. We must now mobilize all of the forces available to us as the greatest nation on earth: medical research, business leadership, STEM education, free speech and smart aggressive advocacy, in the name of effectively treating and, ultimately curing neurodegenerative diseases.

Incredibly, in just a few weeks’ time, through Facebook, Twitter, and old fashioned word-of-mouth, the Ice Bucket Challenge phenomenon has mobilized tens of thousands of Americans to raise millions of dollars for ALS research efforts.

Let’s think about next steps together. First of all, more ice water bucket dumping! If you are an individual or business, and haven’t taken the Ice Bucket Challenge, please grab an ice bucket and get with the program.

Second, we must put the generosity of donors to work immediately. Our researchers must identify the most promising ALS research, both ongoing and upcoming, and require that scientists and doctors work efficiently to meet research goals, i.e., medicine.

Project A.L.S. and partners will continue to do what we’ve been doing for the last decade. With your help, we will direct additional firepower to research already in progress. That includes identifying more genes and stressors that predispose particular people to ALS, finding new therapeutic targets, and building productive alliances between academic research institutions and drug companies.

In a word, the new paradigm for translational medical research is collaboration. Project A.L.S. recruits world leading scientists and manages their efforts as if ALS research were a business.

Let’s grow this business: Keep scientists and doctors well funded, improve research strategies, require scientists to share results with each other and meet deadlines. Our job as non-profits is to provide the environment and leadership for this work to get done.

Thanks to you, Project A.L.S. can build on significant recent breakthroughs. In the last year, Project A.L.S. doctors from Harvard, Columbia, Johns Hopkins, Ohio State, Memorial Sloan Kettering Cancer Center, and elsewhere, have made considerable progress in improving the first ever model of human ALS (from a tiny sample of a patient’s own skin).

In addition, we are aggressively testing drugs that are commercially available for cancer and diabetes for potential efficacy in ALS.

Finally, a team of Project A.L.S. researchers is working hard to isolate the genes that protect the eyes from ALS (they are almost never affected in the disease), and strategize how they might “confer” that resistance on other parts of the brain.

Project A.L.S. will keep working. Rest assured, research can and will move faster on account of your incredible generosity. As the only non-profit dedicated 100% to collaborative ALS research, Project A.L.S. will put your donation to work today, staffing up –and building out--research teams in genetics, disease modeling, and drug screening, so they can work faster and more efficiently.

Let’s seize this pivotal moment, move forward, and conquer the next American frontier—the human brain. The stakes could not be higher.

Meredith Estess is President of Project A.L.S. Find the organization on Facebook and Twitter.