Striking out ALS: from ice baths to Brandeis labsPublished: August 22, 2014
As newsfeeds become bombarded with home videos of the ALS challenge, with individuals willingly dousing themselves with buckets of ice cold water, even celebrities such as Lady Gaga, David Beckham and Brandeis’ own Olympic silver medalist Tim Moorhouse ’00 are joining the fray to combat ALS. Coined the ALS Challenge, the campaign seeks to raise awareness of the crippling disease.
Amyotrophic lateral sclerosis, more commonly referred to as Lou Gehrig’s disease, is a severe neurodegenerative disease affecting the motor neurons of the brain and spinal cord, leading to loss of muscle control and potentially total paralysis of the patient. Only 20 percent of those affected survive five years or longer following diagnosis, and only 10 percent survive past 10 years, according to the ALS foundation. There is currently no cure.
Despite the intention to increase awareness of ALS, skepticism has emerged regarding the ability of the ice bucket challenge to induce a visible, direct impact on the campaign for discovering a cure. Critics have argued that the challenge is a waste of water, labeling it as a symbol of fake activism or “slacktivism,” claiming more people seem to be just dumping the ice bucket on their heads instead of explicitly donating or even taking the time to learn what ALS is.
However, according to the ALS foundation, a staggering $41.8 million has been received in donations from July 29 to Aug. 21 alone, a dramatic increase compared to the $2.1 million received last year during this time period.
Noting the tremendous success of the campaign, Avita Rodal, Ph.D. and assistant professor of biology here at Brandeis, states, “The ice bucket challenge really shows that empathy can be infectious, which I think is a very positive thing.”
Rodal Laboratory, in partnership with Paradis lab, at Brandeis has served an instrumental role in developing research techniques that will be utilized by the Blazeman Foundation, an ALS funding and awareness organization. Dr. Rodal explained, “We’ve known for many years that growth factors secreted by muscles control neuron-muscle connections and the survival of neurons, and that these growth factors need to be transported for long distances in neurons to promote survival.” In those affected by ALS, this process ultimately fails, leading to neuronal death and loss of motor function.
Using fruit flies as a modeling system, Dr. Rodal said, “We have found that growth of neurons is severely compromised when they carry ALS genes, and have found new ways in which growth and survival signals are diverted from their normal transport itinerary in diseased neurons. Using this information, we hope to develop new therapies to return these signals to the appropriate destination, providing a new avenue for future treatment of ALS.”
When questioned about the prospect of developing a cure in the near future, Dr. Rodal expressed mixed sentiments, looking to the exciting prospect of recent research developments while citing the difficulty to obtain funding. Pointing to the discovery of potential new targets for ALS therapies within the last seven years, she explained the small percentage of developed drugs that actually prove effective in patients. She stressed the need to develop and try a wide variety of potential cures.
Despite the exciting potential for research from a scientific standpoint, Rodal said, “The director of NIH [National Institute of Health] estimates that we are rejecting half of all the innovative, exciting proposals because of lack of funding, and more importantly, that many young scientists are leaving for other careers.” Although NIH serves as a crucial source of funding for universities researching neurodegenerative diseases, according to Rodal, it has “lost 25 percent of its purchasing power in the last 10 years” due to government cutbacks.
Keeping in mind the incredible success of the ALS challenge and the potential future of research for the cure, Rodal cites the necessity of obtaining funding for further research. Although the recent ALS campaign has raised millions of dollars in donations and the ice bucket challenge has gone viral with celebrities, politicians and even President Obama playing along, she nevertheless stressed the absolute necessity of continued support for research. She stated, “What’s important is to make sure that we don’t let this be a fad, and that we continue to work like we have this summer, as a community, to overcome difficult challenges.”