Navy Veteran Dedicated to Making a Difference for People Living with ALS

Mike Deeley, a United States Navy veteran from Columbia, Pa., proudly served from 1988 to 1992 as an Aviation Electrician Third Class. In December 2016, he was diagnosed with ALS. Today, Mike generously shares his story about how he is determined to make a difference despite his diagnosis.

Now Mike mainly focuses on enjoying life – traveling and spending time with family and friends – while he is still physically able. He married the love of his life, Tima, this past July (see photo above). “She gets lost with all the stories, but is the person that is always beside me,” Mike said.

“I live my life like I don’t have ALS. Although I have physical effects of the disease that can’t be ignored, I wake up each morning with life on my mind versus the disease,” Mike stated. The same can be said for his family and friends. “I feel I am very fortunate with my situation and support from family, friends, and the VA. I truly wish that all patients that are diagnosed could have the same opportunities that I have had to focus on living life to the fullest while they can.”

Mike was an avid rugby play for many years. “It’s more than a sport, it is truly an extended family that will always have your back,” Mike said. Banding together with his home rugby club, they have raised over $3,000 for The ALS Association.

The rugby club extends well past his home club. Dom Bartone with his “Scrum for Six” annual rugby event is a perfect example. This event has provided close to $500,000 in funding and scholarships in memory and honor of Dom’s brother Mike Bartone who passed away from ALS in 2002.

team

“I was proud to play in this tournament one more time with my home club Roses Rugby,” Mike stated. “Although I was able to put in ten minutes of close contact fun, that was the last time I was able to play. It was truly special being surrounded by Dom, and my teammates on Roses Rugby, Brandywine Rugby, and all of us working together for the foundation, all who I am extremely grateful for.”

It is also extremely important for Mike to advocate for other ALS patients at both the national and state level, to improve their lives, and to increase funding needed to find an effective treatment and a cure. He passionately believes how important it is to remove barriers that prevent people from enjoying the time they have left. He gave examples like removing the five-month waiting period for Social Security Disability Insurance and removing barriers to essential care and equipment that will allow people more time to focus on family, friends, and life prior to losing their physical abilities to function. This especially applies to people with fast disease progression.

“The ALS Association has provided me with a platform for advocacy and getting the word out to the public and our government. Their support has been wonderful in promoting our voice and helping with local fundraising events,” Mike said. He also formed several personal relationships with people from The ALS Association Greater Philadelphia Chapter that he knows will be a part of his circle of support when he needs them.

“Having this disease has focused me towards being more charitable and giving to other people. It is likely that I will never see a cure or an effective treatment, but we can focus our efforts towards helping future generations in any way possible,” said Mike.

Mike, like all military veterans living with ALS, is tough, focused, and determined to never give up. Thank you to Mike for his service to our country and sharing his story of living life to the fullest and making a difference for others living with this devastating disease.

bootcamp
Mike at bootcamp

Mike, like all military veterans living with ALS, is tough, focused, and determined to never give up. Thank you to Mike for his service to our country and sharing his story of living life to the fullest and making a difference for others living with this devastating disease.

Military veterans are two times more likely to have ALS compared to the general population, no matter when or where they served. The ALS Association is laser focused on understanding why this is happening by supporting research dedicated to uncovering new disease pathways and therapeutic targets. We are moving quickly to advocate for U.S. military veterans and others living with ALS to receive the best equipment, care, and support as possible.

Donate today to help make a difference like Mike!Screen Shot 2017-09-05 at 11.30.37 AM

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