This is Matt. He is 31 years young, loving husband and father of two precious boys.
He was a newly married, active pilot in the Navy – who began to have troubling symptoms before he was even 30. Maybe you have had the good fortune if not yet knowing anyone affected by ALS. Sadly for Matt and his family they are all too familiar with the devasting affect ALS will continue to have on their lives.It was an honor for me to spend time with them, to be in the presence of a family so full of life and laughter in the face of the tough hand they have been dealt.
The ice bucket challenge last year thankfully has given so much more awareness to ALS. We need to keep the momentum going though. Here are some simple facts: Every 90 minutes a new diagnosis is given, contributing to the 450,000 people worldwide living with ALS. Most people diagnosed with ALS live only an average of 2-5 after their first signs of the disease. The symptoms begin with muscle cramping and twitching, and progress to complete immobility, including the ability to swallow and breath. It is a horrific diagnosis, and for those with ALS there is absolutely no time to waste.
Matt is working with ALS TDI – Therapy Development Instititute. ALS TDI is the world’s first and largest biotech focused 100% on ALS research, led by scientests and people living with ALS influence in their lives. It is a unique organization which is not proprietary with it’s research findings- which means they will openly work with other researchers, sharing their findings all in the highest priority of finding that cure. Matt is also continuing to work with the Navy to encourage more funding to go toward research for ALS. Military personnel are two times more likely to develop ALS. Our nation’s bravest and strongest are no match for this disease.
Our local Newtown Athletic Club is working in partnership with Matt to raise funds and awareness. This past February they successfully surpassed their fundraising goals and raised $80,000 which went directly to Augie’s Quest, partnered with ALS TDI. The NAC has committed to continue working with Matt and Augie’s Quest. For more information please visit Matt’s Mission.
Matt is listed as an ambassador for Young Faces of ALS, created to raise awareness through advocacy and fundraising. The ice bucket money has given great momentum in tripling research dollars and improving the lives of those living with the disease. But we do not have a cure yet, and there is no stopping the devastating affect of ALS until a cure is found. Please take the time to increase your awareness, and consider helping in some way.
In talking with Matt, he shared that there has been one positive side to having ALS. The people he has met along the way whom he might not have otherwise, that have given him faith in humanity and the world his boys will grow up in.“We make a living by what we get, but we make a life by what we give.” - Winston Churchill