I need your help. I'm participating in the ALS Association's CEO Soak to raise critical funds and awareness to help fight back against this disease. Inspired by the Ice Bucket Challenge, the CEO Soak engages our corporate, business, and community leaders to GET SOAKED once again for ALS.

People with ALS can go from perfectly healthy to quickly being unable to move, swallow, or breathe. It can strike anyone at any time and there is no cure. The ALS Association is the only national nonprofit organization fighting ALS on every front. Through your gift to the CEO Soak, you help us to continue providing hope and help to those in our community living with ALS and their caregivers, while aggressively searching for new treatments and a cure.

My brother Jon was a frontline worker (Police Officer) his entire adult life.  He was proud to wear the badge with honor and was a well known community advocate.   Jon was also an avid ice hockey player, a left handed goalie, so he stood out not for his GAA but for the fact that his right hand had a catching mit on it not a blocker as we so often see with goalies.  Jon had the pleasure of getting to know the Boston Bruins when they trained at the Wilmington, MA Ristucca training center.  He became very good friends with Andy Moog #35 and Reggie Lemelin #1 who actually was able to allow Jon to periodically play goalie during some of the Bruins practices.   

I was fortunate enough to play alongside my brother in an Adult Hockey League.  When Jon’s wife AnnMarie passed from her 9yr battle with breast cancer, not only was Jon completely lost in life, he then developed rapid ALS symptoms and was later officially diagnosed with ALS.

Jon’s journey with ALS began on the heals of his wife’s passing and morphed quickly into a complete degradation of life.  His humor throughout is all that our family remembers, incredible stories from his 2 Warrior Son’s, Cameron and Zachary.  Watching these two young men go through the turmoil of losing their mom and then quickly watching and caring for their dad was heartbreaking and awe inspiring to all that know them.   

Each year by partnering with the Boston Bruins Foundation I would put on an ice hockey event called Mammo vs Ammo.  In honor of ones who are battling or have battled with Breast Cancer and Ammo for our troops who in many cases are left dealing with mental wellness challenges.  I now am hoping to bring an ALS ice hockey event to life.  I am using this platform to raise awareness but to also raise spirits and hopes of how a family can go through ALS and come out wanting to celebrate their ALS members who have passed by playing a sport that they loved.   Please help me on this quest.  

ABOUT ALS 

Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of a person with ALS averages 2 to 5 years from the time of diagnosis.

ALS can strike anyone. Presently there is no known cause of the disease, yet it still costs loved ones an average of $250,000 a year to provide the care people living with ALS and their families need. Every 90 minutes, someone is diagnosed with ALS, and every 90 minutes someone dies from it. These facts are why we need you to help make a splash in the fight against ALS today.