First It started with muscle cramping
Then a movement of her hand
Then some slurring of her speech
Then a change in the way she walked
My mother was diagnosed with Amotrophic Lateral Sclerosis -ALS (Lou Gehrigs Disease)
A horrific neuromuscular degenerative disease that destroys nerve cells in the brain and spinal cord
Before our eyes…
She can’t walk
She can’t swallow
She can’t speak
She can’t dress herself
She cant move her lips to kiss me…
What is ALS ???
ALS is a brain disease that is closely related to Parkinson’s, Alzheimer’s, and Huntington’s diseases.
Also known as Lou Gehrig’s disease, ALS targets brain cells in the brain and spinal cord called motor neurons. Motor neurons are responsible for sending messages from the brain to muscles throughout the body.
In ALS, as motor neurons die, a person progressively loses the ability to walk, speak, swallow, and breathe. ALS is usually fatal within 2-5 years of diagnosis, but Project A.L.S. and others are working together to develop the first effective treatments. Our current strategy is to slow the progression of ALS until we can cure it.
What is Guitar For a Cure©???
When I sat with my hand holding my mothers when diagnosed with ALS…It dawned on me that the shock of hearing this is something that too many people face…year after year. After 16 months of suffering, I held my mothers hand again as I said goodbye to the best friend and most wonderful human being in my world….Lillian Gusmano, my mom.
I channelled my passion of music, one that she had embraced since I was 5, into bringing out music I had written…and had the idea to help in some way, but I was unsure how. How does one contribute to the thousands who suffer from ALS and put forth such passion into it. My greatest love has been music….so I formed Guitar For a Cure © and began to write and plan the release of my instrumental guitar compositions. In 2010 I released “A Flickering Light,” a collection of instrumental guitar compositions of which 100% of all cd sales, both hard copy via the website and digital….would be donated to Project ALS. In the later stages of my mothers disease, my father and I met with the Estess sisters whom run Project ALS. We sought support and a way we can help learn more.
Founded by Jenifer Estess, her family, and friends, in 1998, Project A.L.S.TM is a 501(c)3 company dedicated to understanding, effectively treating, and curing ALS, also known as Lou Gehrig’s disease. In fifteen years, Project A.L.S.TM has raised over $67 million and changed the paradigm for medical research. Project A.L.S.TM scientists are required to work together, share data openly, and meet project milestones and deadlines.
Since 2010, I have been honored to be named one of the top independent 501 (c)3 fundraisers for Project ALS (2010, 2011, 2012, 2013). Proceeds from every live performance and all cd’s is donated to something I feel strongly about…which is research for this dreaded disease. My journey has been one of spreading the word to the music community how music and guitar can heal. Guitar For a Cure © has been featured on FOX News, NBC Non Stop, Clear Channel and CBS Radio, Newsday, Guitar Player, Eddie Trunk, Fios1 of Long Island, WPIX and many other media outlets. Live performances of my original music at such venues as BB Kings, Highline Ballroom, Roseland, Crash Mansion and others around the Tri State Area of NY are nights filled with great rock music and spreading the word for a cure. To date, I have raised approx $25,000 for Project ALS through my music….and will continue to support those families whom have a loved one suffering from ALS. Join me on my quest to spread the word about ALS by supporting homegrown music. Music was my mothers greatest passion and I will use this passion to help fight for a cure! Thank you for your support and taking time to read this…..xo