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Joining the War on ALS

Mary Ann Blais, Bob Blais, Jon Blais and Bob Laird, medical director for Ironman World Championship triathlon, in 2006

Jon “Blazeman” Blais’ War on ALS® has come to Brandeis.

Thanks to a $274,100 gift from the Blazeman Foundation for ALS, Mugdha Deshpande has been named the Blazeman Postdoctoral Fellow for ALS Research and is utilizing a novel research approach developed in assistant biology professor Avital Rodal’s laboratory to search for a cure to the disease that ended Blais’ life in May 2007. ALS (amyotrophic lateral sclerosis) is a neurodegenerative disease that causes death of motor neurons, leading to paralysis and death, usually within five years of diagnosis.

“We thank the Blazeman Foundation for its support of the innovative research being carried out by our scientists,” said Susan Birren, dean of the College of Arts and Sciences at Brandeis. “We look forward to our collaboration and the discovery of new biological processes that contribute to ALS. We hope that this work will contribute to the development of new therapies for people suffering from this awful disorder.”

Relying on previous ALS research that has uncovered a set of important cellular processes that cause degeneration when misregulated, Deshpande is studying how the membrane-bound packets carrying survival cues inside neuronal cells are formed, loaded and transported; how mutations that cause ALS affect these events; and how the events can be manipulated to treat the disease. She is employing genetic tools to attempt to manipulate the packets’ growth signals and transport machinery in fruit flies that have been engineered to model ALS in hopes of restoring the neurons to a healthy state. Deshpande will also collaborate with assistant biology professor Suzanne Paradis, an expert on mammalian neuronal development and synapse formation, to test how the findings from her fruit fly experiments apply to ALS models in mammalian neurons.

Avital Rodal“We are extremely grateful for the generosity of the Blazeman Foundation and excited about this project,” said Rodal (pictured left). “ALS is a devastating disease for both the victims and their families, so we are highly motivated to explore a new approach to treatment. We want to understand what has gone wrong with transport in neurons, and then go back and try to tweak these specific cellular defects back to a healthy state. By funding this project for five years, the Blazeman Foundation has provided us with an unprecedented opportunity to fully explore what we think is a novel therapeutic strategy for ALS patients.”

The Blazeman Foundation first learned of Rodal’s cutting-edge research when Bob Blais, Jon’s father, read a story in the Brandeis Hoot student newspaper about her winning a $1.5 million National Institutes of Health Director’s New Innovator award to help fund her lab for five years.

“We found that grants were being given to the same people and the same institutions,” said Bob, co-director of the foundation with his wife, Mary Ann. “Jon would always say, ‘Where is it written that one of these guys will give us the answer?’ He wanted us to find individuals who were thinking out of the box. That’s what we have done with this grant.”

Doctors diagnosed Jon with ALS on May 2, 2005, 66 years to the day after baseball slugger Lou Gehrig famously took himself out of the New York Yankees lineup following 2,130 consecutive games due to the effects of the illness that eventually also became known as Lou Gehrig’s Disease.

Jon, who was 33 at the time, immediately declared a “War on ALS.”® Recognizing that his efforts would likely not save his life but could help others, he founded the Blazeman Foundation to raise awareness and help secure funds to support research to develop treatments and a cure.

Five months after being diagnosed and at least one year after his symptoms started, he brought attention to the fight against ALS by fulfilling a long-held dream to compete in the Ironman World Championship triathlon (2.4 mile swim, 112-mile bike ride and 26.2-mile run) in Hawaii. Although he could not train for the race -- neurologists were concerned that his preparations might speed the course of the disease -- he recorded a time of 16 hours, 28 minutes and 56 seconds, punctuating his effort with a “log roll” at the finish line. “Jon wanted to put a face on ALS,” Mary Ann said. “To him, not finishing was not an option.”

Even before being told that he was suffering from ALS, Jon had already spent a lifetime winning fights that others would not even undertake. Born and raised in Seekonk, Mass., he had difficulty focusing in school and was an extremely active young boy, but always improved with structured athletics (he was a standout high school runner and swimmer). He was later diagnosed with attention deficit hyperactivity disorder.

Jon always wanted to become a teacher and work with children, but was encouraged to follow an alternate career path because of his own difficulties in school. However, he persevered, graduated from Rhode Island College with a degree in special education (he was pursuing a master’s degree at the time of his death), and went on to work with learning-disabled and emotionally challenged students at the Aseltine School in San Diego.

“He would always say he could identify with these young students, and used his love of sports and the outdoors to motivate them inside and outside of the classroom,” Mary Ann said.
 
“Jon didn’t mind struggles,” Bob said of his son. “He went at them with a certain gusto that defined who he was. He fought many battles in his life. Adversity did not scare him. Part of one of the last poems he wrote sums up his life best, ‘Face your fears and live your dreams.’ ”

Categories: Giving
Date: July 16, 2013