ALS: One Year Later

by Jacqui Nieber

It’s been one year since I tracked the medical and emotional developments within the ALS community through one man: the late John Anderson. And one year ago, the community was boiling over with new discovery, with passionate people ready to conquer this disease that is understood by so few. It was a community on the brink.

This year, the ALS community is still on the brink of new discovery—but it’s a little closer to falling over the edge. In a medical community this complex, discoveries can only chip away at the mystery of the disease, driving us all closer to the cure one breakthrough at a time. Michelle Farr, whom I interviewed last April, stepped back into the picture to share new developments in the ALS community.

When it comes to change, not much has been happening, Michelle originally said—but that might not necessarily be true. New discoveries are being made in small waves that researchers, doctors and advocates are hoping will eventually take the community by storm.

“[Now we are] able to look at genetic information and look at big data analytics in ways we’ve never done before,” Michelle said. “That architecture is being built right now to do this.”

ALS has historically been a murky, complex neurological disease—impossible to cure, impossible to even find efficient treatment for. Therapy was never specific to each patient: instead, people like John Anderson waited in hospital cafeterias, in wheelchairs, discussing probably futile methods of fighting the disease.

That, at least, is changing. This architecture Michelle spoke of includes a prolific information base and genetic research framework that will come together to allow doctors to begin specializing different treatments for different patients. She was unable to name names, but some of the largest computing companies in the world are helping powerful individuals within the ALS community compile data to better assist doctors in their research.

“This is all so we can characterize what is happening in the brain and in the human body, so then we can say [my ALS] is different than [your ALS],” Michelle said. “How do we know this? Because they were able to get down to the molecular level. We’ve never been able to do that but now we can say, let’s look at it, let’s explore. Then we can start to match therapy with types of ALS. We can start to do more personalized medicine.”


Michelle also described a new initiative spearheaded by Answer ALS, a campaign that brands itself as the largest coordinated and collaborative effort to end ALS in the history of the disease. Six new clinics will be created in order to conduct more research than ever before, on more patients than ever before.

“Doing this really is an unprecedented collaboration: an unprecedented scale of research,” Michelle said.

$20 million of research has already been poured into the first stages of this project, which aims to categorize and understand the different types of ALS in order to identify treatments that have been eluding doctors for years. Michelle relates this approach to breast cancer in that there are many different forms that disease can take, and so the community has managed to shape and mold several treatment plans to best accommodate different symptoms and courses the cancer may take within the body.

Michelle summed up this effort in a simple phrase by asking, “Am I detailing with one disease that’s really complicated and hard, or fifty different diseases?”

Doctors are newly able to think about differentiating between different types of ALS, but the patients themselves have been telling their doctors for years, because individuals react in drastically different ways to different medications. A drug that worked for one person, may not have worked for John Anderson in his fuzzy black socks that stood out against the linoleum of the Johns Hopkins hospital floor.

To further develop specific treatment plans, doctors are also learning how to match patients to specialized clinical trials so more tests can be run.

“Blood is being drawn, stem cells are being grown,” and all information will be traced back to individuals, which will have a mythically positive affect on treatment options, Michelle said. Even more shocking—all of this information will be made publicly available to patients and families through a secure cloud called the ALS Knowledge Network. Patients will be kept anonymous, but this will be a vast resource for anyone who needs information of the disease. Michelle hopes the network will bloom,   without taking the place of other important initiatives.

Michelle had originally told me not much has changed in the last year since I dove into the ALS community—but she corrected herself at the end of our conversation.

“A year ago, [specific treatment] was a hope, and within that year we not only developed a very rigorous plan, we had it peer-approved by multiple scientific boards and bodies across six different large institutions,” she said. “And we got it funded and implemented—right now.”

The hope in her voice takes me back to John Anderson and his wife Amanda, who cleaned bits of food off his chin as he made his way through a veggie burger with determined teeth. He is gone now, but I know I’ll meet more patients with a similar sense of determination and will to beat a disease that is slowly shaping into something less mysterious and more recognizable, in all its murkiness and danger.

“A year from now I hope the ALS Knowledge Network is alive,” Michelle said, to wrap up what she now considers to be an important and vital one year. “I hope that a year from now I’m talking to you about how easy it is to access. I’m always hopeful.”