ALS is an uncommon disease but, when it strikes, it is devastating. Amyotrophic Lateral Sclerosis slowly but constantly destroys the nerves that connect one’s muscles to the brain. As the nerves die, the brain loses the ability to fire the muscles and the patient becomes slowly paralyzed. Eventually the muscles required for breathing are paralyzed and death is caused by respiratory failure.

 

The disease can be sporadic (which occurs in 90% of cases) or it can be genetic (occurring in 10%). If it is genetic, each child has a 50% chance of inheriting the gene. Such horrible odds can devastate whole families. 

 

However, there is a light in this dark disease; Dr. Robert Brown is a world renowned researcher leading the fight. The lead which he led made the first discovery of a gene linked to Genetic cases of ALS, called SOD1, in 1993. Later, in 2008, he and his colleagues at the UMass Medical School discovered a second gene. 

 

Unfortunately, the personnel and equipment needed in the fight against this horrific disease is not cheap. For Dr. Brown, this means that he can’t spend all of his time in the lab performing research and has to allocate more time to applying for grants. For ALS patients, the time lost to grant-applications could be the difference between life and death.

 

Enter Jake Kennedy. In 2019 he was the 4th member of his family to be diagnosed with ALS. In 2020 he was the 3rd member of his family to die from it (his younger brother Ratt continues to battle the disease). Before Jake died, he and his wife created a fund at the UMass Medical School to address these issues.

 

The Jake Kennedy ALS Fund is a discretionary fund with no overhead. This means that Dr. Brown has complete control over the money; if he needs a new piece of equipment or needs to expand the team, he can do so as he sees fit. Because the fund has no overhead (no marketing team, no directors) 100% of money donated is delivered to the research. Most importantly, the money is being given to him without any time spent applying. With enough help from this fund, Dr. Brown can direct all of attention to defeating ALS.