The real challenge: creating a world without ALS

If you use Facebook, you may notice a plethora of videos showcasing people dumping ice waters on their heads. These impromptu showers are actually the result of a campaign by the ALS Association to raise money and awareness in the fight against ALS.

What is ALS?

Amyotrophic Lateral Sclerosis or ALS is a degenerative neurological disorder. You may have also heard this disease referred to as Lou Gehrig's disease named after American baseball player Henry Louis "Lou" or "Buster" Gehrig. His sudden retirement from baseball following his diagnosis brought global attention to the disorder back in 1939.

ALS typically strikes adults between the ages of forty and seventy and as many as 30,000 people currently suffer from the disorder in America today. This neurodegenerative disease attacks the motor neurons throughout a person's spinal cord and brain. The 'motor' aspect of the name refers to the role of these neurons in enabling communication between your brain and the control of your voluntary muscles.

What is living with ALS like?

At first, intermittent communication between the patient's brain and motor nerves may initially manifest as a feeling of weakness in your hands and feet since the signal to move is not completely received. Daily tasks we typically take for granted, like walking, talking or even swallowing, can become very difficult. Unfortunately, these symptoms progressively worsen. Neurons that lose communication will start to die. The end result is that a majority of individuals only live for an additional 3 to 5 years following diagnosis with only a few percent living for another 10 years.

The video below highlights the story of an Army Veteran living with ALS.

What is the current research on ALS teaching us?

Despite first being described by French neurologist Jean-Martin Charcot in 1869, no cure currently exists, but the quest to create a world without ALS rages on.

Kevin Eggan at Harvard University published a paper earlier this month validating a potential therapeutic target using neuron cells from mice as a model. Previous work by Eggan's team demonstrated that glial nervous system cells, normally present to protect neurons, were actually involved in neuron degradation in ALS mice. The most recent work expanded these findings by identifying a receptor on these glial cells called prostanoid receptor DP1 involved in their toxicity to motor neurons.

Removing this receptor from glial cells in ALS mice extended their lifespan by 5-10%.

This study is just one example. Organizations like the ALS Association are dedicated to 'lead the fight to cure and treat ALS through global cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support'. The ALS Association has donated over $60 million dollars towards research on ALS.

Why are people dumping ice on their heads?

The ice challenge represents a clever way for the ALS Association to raise awareness. The challenge has spread quickly through social media since it revolves around individuals, who take the challenge, nominating their friends to do the same and donate money.

I was hesitant when I was nominated. Like others, I was worried the focus was more on the social aspect and less about ending a terrible disease and promoting ALS research. However, I am happy to report that I was wrong.

According to ALSA's national president, Barbara Newhouse, the campaign has been a resounding success. Last year, ASLA raised $14,000 but have raised as much as $168,000 this week alone! In total, they have raised millions.

Below, you can see how I opted to take the challenge. To support my fellow researchers, I also donated $25 to the ASL Association.

Kenny Flynn taking the ice bucket challenge, microbiologist style. In addition to dumping a graduated cylinder's worth of ice water on himself, he also donated $25 to the ALS Association.

If you do take the ALS ice bucket challenge, have fun and consider donating to help end a terrible disease. And remember, stay hungry!

1 Comment

Kenneth Flynn

I am currently a Ph.D. Candidate at the University of New Hampshire studying the adaptation of small micro-communities of bacteria called biofilms. You'd be surprised how important the things you cannot see are to your everyday life.