Our Story

  In the latter part of 2016 I received my positive diagnosis of ALS (Amyotrophic Lateral Sclerosis). Dealing with the initial diagnosis was about as shocking as the preceding sentence. Many thoughts went through my mind with family being at the top of the list.  

As someone who is from a strong family, going through the process of telling them was the most difficult thing I have ever done. My concern was not with how I will deal with the disease, it was how will my family deal with the loss.  Will I be a physical burden? Will I rack up financial debt that will strap my family for years? 

There was a small group of people that I discussed the disease with prior to the holidays. They were my fiance, parents and best friends. I chose to wait until after the holidays to tell the rest of my family, soon followed by friends and Rugby team. For weeks, I was on an emotional edge. Waves of emotion would flow through me when I thought about what was coming up. 

One thing I started to realize is, telling my Rugby Family was just as much of an emotional issue as my immediate family and friends. Why? To those who have never played the sport you may not understand.  Rugby teams are more than just people on a team, they are truly family.  These are lifelong friends that I know will always have my back, and me in return. The saying is true, “For he today that sheds his blood with me, shall be my brother”. 

Moving past that time which I refer to as “hell week”, I could start moving forward with my life. I know what I have but, I’m not willing to stop being who I am or doing what I do. I am determined to live life to the fullest and enjoy every bit of it. My other goal is to make an impact. I don’t really know what is driving this. I don’t think it’s “grand standing” or trying to get attention. I think I’m just a little pissed off and it’s my way to take a swing back at this disease.  

This is where I started, Rugby Smash ASL (RSA). RSA is a movement to organize the thousands of independent Ruby clubs across America to partner with their local ALS chapters to raise money and awareness. See, this is simply leveraging the strongest, hardest working, loving, craziest and dedicated group of people I have ever been a part of. Rugby Players.  

By partnering with local ALS chapters both the ALS Association and the Rugby Clubs are winning together. We can create exposure for both organizations, increase the size and scale of fundraising efforts and provide a great community service for clubs to participate in. 

In 2017 the Roses Rugby Club will be the first organized event to be used as the building blocks for the future. Roses Rugby will be hosting its annual golf tournament in August of 2017. Leveraging a relationship with the ALS Association of Greater Philadelphia, we are projecting that we will raise three times the profit as last year and have almost twice as many participants. Not all profit will go directly to the ALS Association as, this is still a fundraiser for the club. But, a significant portion will be donated to the ALS Association of Greater Philadelphia.  

In the end, we will have formed a relationship that will grow through the years and provide mutual benefits for both sides. I can say from the Rugby side, they are some of the most caring people I know. Simply being a part of something so meaningful will keep this moving forward. 

Now, think of the future….. 

Yours Truly, 

Mike Deeley