Photos and text used with permission of
US Navy Lt. Commander Matthew Bellina.
Matt Bellina had been a naval aviator flying the EA-6B Prowler out of Naval Air Station Whidbey Island on Washington's Puget Sound when the twitching and loss of coordination began. By the time he was given a preliminary diagnosis of amyotrophic lateral sclerosis, ALS, in January 2013, Matt had already been grounded due to his worsening symptoms and had relocated to Minnesota. The diagnosis was confirmed in April 2014 when Matt was only 30 years old. His life as an active father of two boys, ages 1 and 3, was completely turned around as he had been forced into administrative duty and faced upcoming medical retirement from the Navy.
While living with the preliminary diagnosis, Matt connected with Dr. Carol Hamilton from the ALS Therapy Development Institute (ALS-TDI). After learning more about ALS-TDI, Matt was inspired to drive to Cambridge, Massachusetts, to meet Carol and see the ALS-TDI facility. This led to helping with fundraisers for that facility, as well as the ALS Cellucci Fund at the University of Massachusetts and Johns Hopkins University's Packard Center, along with events with baseball's New York Yankees (Lou Gehrig Memorial Game) and Philadelphia Phillies (Phillies Phestival). Matt was also selected to help lead an ALS-TDI awareness campaign called Young Faces of ALS (YFALS). Serving as an YFALS Ambassador has given Matt the opportunity to network with many ALS patients and their families and to be a catalyst for accelerating research at ALS-TDI. Matt has also participated in a gene mapping program at the ALS clinic at the University of Pennsylvania and ALS-TDI's Precision Medicine Program.
By participating in these opportunities and raising his own awareness, Matt is now committed to being fully present and fighting this devastating disease. Through the ALS-TDI, Matt found the opportunity to serve as a peer reviewer for the CDMRP's ALS Research Program (ALSRP) and welcomed the prospect of immersing himself further in therapeutic development efforts. Matt relishes the opportunity to discuss medical research with some of the brightest minds in the industry and says he wishes every ALS patient could do the same. Participating in peer review has been an exciting and humbling learning experience, and the scientists' extensive knowledge and the content of the research proposals has given Matt hope for the future. As a consumer reviewer, Matt tries to emphasize the urgency of pushing meaningful research forward and was happy to see that scientists share his forward-looking perspective.
While not initially as optimistic, Matt has learned to embrace the life challenge of living with ALS. He now says "With ALS, every day could be seen as a new defeat as muscles and function fall away. I have learned that every day is actually a blessing because of the things I can still do. I can't fly anymore or lead sailors, but if I dwell on the losses, then I think I will have lost. It is such a victory that I can wake up in the morning and see my kids' smiling faces. It is a victory that my wife gives me a kiss when I head out the door, and it is a staggering victory that today is one day closer to us finding a cure for ALS."
Last updated Wednesday January 27 2016