Pat QuinnPat joined the GOBOLDLY campaign to shine a spotlight on the courageous patients like himself starring this disease down and to say “thank you” to those researching ALS’ end. We recently sat down with Pat to talk more about his diagnosis, his journey and how he helped play a critical role in the ALS Ice Bucket Challenge.

 

  1. What was your first reaction when you were diagnosed with ALS?

    My first reaction was a mix of emotion where I was crushed, but deep down knew it was coming. It took almost two years to get diagnosed, so in that time I researched everything possible about my symptoms. It all pointed to ALS. I never gave up hope, the doctors would somehow find something else. Anything. But on March 8th, 2013, I heard those 3 letters, ALS, as a confirmed diagnosis. In a state of shock, I walked outside, sat on a bench by myself, and stared into the sky. I can still feel the cool air from that day when I think about it. It is a moment you never forget.

  2. Why was it so important for you to spread awareness about the disease?

    Awareness is crucial in making people see the devastation caused by ALS. More awareness brings in more funding. More funding equals more research and support for patients. After the diagnosis and the initial shock wore off, I started looking into what was going on to fight back against ALS. I found a couple young ALS patients who inspired me, Steve Gleason and Pete Frates, but there wasn’t much else going on. I knew I was young, strong, and could make a difference. I didn’t know anything about the disease except that Lou Gehrig had it, and it wasn’t good. If I didn’t know, I figured others didn’t know either. I decided to put myself out there publicly and haven’t looked back since!

  3. How did you become involved with the Ice Bucket Challenge?

    The Ice Bucket Challenge was going around for different causes until a golfer in Florida did it for his cousin living with ALS in Pelham, NY. I noticed it on Facebook through mutual friends and saw another opportunity to create awareness. We got our family, friends and pretty much anyone we could reach to take the challenge for ALS. I was in the right place at the right time to make the Ice Bucket Challenge pop. Within a day, my Facebook newsfeed was nothing but videos of people dumping buckets over their heads for ALS. It really took off locally in my hometown Yonkers, NY, as well as all over Westchester County. But there was one more move needed to reach even more people and that was getting it to Boston. I became friends with Pete Frates shortly after I was diagnosed. We had a lot in common and were facing similar difficulties. I looked to him for support so I knew the Ice Bucket Challenge needed to get to him. After it went from New York to Boston, it went worldwide. It took a life of its own reaching athletes, musicians, celebrities, even world leaders. It’s the biggest philanthropic movement in social media history!  It was amazing!

  4. How important was the Ice Bucket Challenge in educating people about the disease?

    The Ice Bucket Challenge woke the world up to ALS. The awareness helped to educate millions around the globe about the disease. Most people knew nothing or very little about ALS before the Ice Bucket Challenge. Do I think everyone that took the challenge started researching ALS after? No, but many did take the time to look into it. People are familiar with the disease now. This makes it easier to discuss with others and less of a burden on patients having to explain to people what they have. It may seem minute, but trust me, it’s made a big difference.

  5. How does it feel knowing the direct impact you are having on this much needed research?

    When you are diagnosed with a terminal disease, you really have two roads you can go down. One way is accepting your death sentence, doing nothing and waiting to die. Not for me. The other road is a lot tougher, but you get so much more out of yourself that it can change you. In a weird way, ALS gave me a drive and passion to make a difference unlike any time prior to diagnosis. I’ve never worked so hard in my life. The Ice Bucket Challenge showed me you can have an impact if you do everything you can to fight. I’m proud to be an ALS Advocate battling this thing for so many who can’t. I will do everything I can for as long as I can. The direct impact I have seen inspired me.

  6. What do you think the future holds for treating ALS?

    ALS is a disease with no cure or treatment, but there is more hope now than ever before in the ALS community. Now is not the time to let up. We must continue pushing forward. Treating this disease is happening, it’s just a matter of how soon. I’m hoping very soon!

  7. What would you say to researchers currently researching the disease?

    Thank you!! Anyone who dedicates their professional life to researching a disease that’s never been beaten deserves all the credit in the world. Some of the brightest minds in the world are researching ALS. I am extremely grateful.

  8. Is there anything you wish everyone could understand about how ALS impacts you?

    I wish everyone understood that although ALS is deteriorating my physical body, it does not touch my mind. Honestly, I’m the sharpest I’ve ever been right now. ALS is currently robbing me of my voice. It’s important that everyone understands that I may be losing my voice, but my mind is working great.