Hello!

My name is Maura McNulty. In my everyday professional life, I advocate for individuals with disabilities and their families.  Throughout my 25+ years in special education, I have encountered a vast array of brain disorders.  However, up until a few years ago, I knew very little about ALS (That’s Lou Gehrig’s disease, right?).  Then, I met my “partner in all things”, my Love, my Heart, Tim Rooney.  It was through getting to know him and learning more about his “story” (We all come from somewhere--TSR), I began to have a better understanding of just how debilitating and devastating ALS is for folks diagnosed with the disease and for those who love and care for them.  Therefore, I simply cannot relay my own personal investment/involvement in spreading ALS awareness and finding its cure without sharing how it has directly impacted My Guy and his family.

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According to the online resource, www.als.org, ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord; it is currently incurable and almost always fatal. About 90% of ALS cases occur without any known family history or genetic cause. Additionally, every 90 minutes, someone is diagnosed with the disease, and someone passes away from it.

Now, this is where the Rooneys come into play.  The other 10% of ALS cases are genetic and it’s this type, familial ALS, that has claimed the lives of Tim’s mother, one of his brothers and his aunt. Because it has been confirmed that there is a genetic component, Tim, his three children, Tim's siblings and their children and all future Rooneys are all at risk for the disease (And by “risk”, what that really means is the odds are 50/50; either they have the gene or they don't).  In the words of Forrest Gump, “That’s all I want to say about that” (It hurts my heart too much to think about therefore, I am committed to living in the present instead of living in the Land of What-Ifs).

So, needless to say, I have a vested interest in finding a cure; I have skin in the game! Here’s the rub though…scientific research is expensive and I am a woman of meager means.  Additionally, I am a terrible fundraiser; asking for money is something that has never been easy for me (in fact, I can think of very few things that make me more uncomfortable). But! Here’s what I CAN do:

Last year, I joined Tim and rode with Team Bannon for the TriState Trek.  There were all sorts of triumphs (set a personal distance record-105 miles!) and plenty of tribulations (there was the sunscreen in the eye incident, the crash, my poor car, etc.). Gosh, it was the hardest thing I have ever attempted to do both physically and mentally. However, I knew that I would do it again and the next time I would come back smarter, stronger, and faster.

Well, here I am a year later and another year older. The ride is NEXT week-end and I am feeling ALL of the things...I didn't ride far or hard enough; I didn't train for the hills like I thought I would, and my longest ride this year has only been 75 miles.  Despite my apprehension about my preparedness (more like lack thereof), how lucky am I to have the physical ability to even believe I can take on such a task? C'mon, Body, don't fail me now!  READY OR NOT, HERE I RIDE!

So, whether it’s words of encouragement (yes, please!), a financial contribution (if you are so inclined) or both…any and all are appreciated.  Please, I need them ALL, especially this year.  Like last year, I will post daily updates on Facebook.  

Humbly and graciously, I thank you.

With love and gratitude,

Maura :)