Mary Ann Emerick: Running and Raising for Huntington’s Disease

By Matt Alesevich | 06. August 2015

 

In honor of 2 Million Mudders crossing our finish line, throughout the month of August, we'll be highlighting the personal fundraising efforts of inspiring Mudders. To learn more about running and raising for charity, visit our official 2 Million Mudders page.

Any day now, 27-year-old Mary Ann Emerick from City Island, New York knows she could start showing the symptoms of Huntington’s disease, the disease that took her mother, grandfather and aunt.

There are people who sugar coat, and there’s Mary Ann Emerick.

A 12-time Tough Mudder and 2014 World’s Toughest Mudder and 2015 Urban Mudder finisher, Mary sees each Tough Mudder as a metaphor for her life, a life which she’s dedicated to HD awareness.

Leading up to her first Urban Mudder finish, we caught up with Mary Ann to talk about fundraising for the Huntington’s Disease Society of America (HDSA) along her Mudder journey.

How did you first get involved with Tough Mudder?

The day after a couple of friends and I ran a small mud run, I was looking up this Tough Mudder people were talking about at the race. That day, me and my friend decided to sign up for the next Tough Mudder possible, which landed us in Miami. We had four months [to train], and I knew I had to start working out. Physically and mentally, I was not ready.  But after that first Tough Mudder in Miami, I became addicted and wanted to push myself more.

Last year you used Tough Mudder to raise money for charity. What inspired you to do that?

I watched my mom battle Huntington’s Disease for over 10 years and then pass away [from the disease]. It is a hereditary disease, so it is no stranger to my family.

I wanted to do something positive for something that has been so negative in my life.

My grandfather and aunt have passed away from it, and my uncle is currently fighting it. My sister, my younger cousins, and I are all at risk. I wanted to do something positive for something that has been so negative in my life.

How did you fundraise and how much were you able to raise?

I was able to raise a little over $5,500. I used social media to share my journey and my fundraising efforts. I was on Fox News and in a local newspaper to share the advocacy work in D.C. being done for Huntington's disease. Early last year I began running these events to try and raise awareness. I would wear blue (the official color of the cause), a Huntington's Disease shirt and use social media to promote why I was running. When I decided I wanted to run the World's Toughest Mudder, I thought this was the perfect opportunity to continue my fundraising journey.

What exactly is Huntington's disease and who does it affect?

Huntington's disease is a rare hereditary and neurological disease that deteriorates the brain and the body. It robs a person’s ability to walk, talk, think and reason. Imagine ALS, Parkinson's and Alzheimer's all wrapped up into one horrible disease. There is no cure or treatment and each child [with an affected parent] has a fifty-fifty chance of inheriting the gene. People usually start showing symptoms in their thirties.

You are 27. What’s it like approaching the symptomatic years?

I am now just a few years away from when people have said my mom began showing symptoms, so of course every time I trip or can't remember something I think it is starting. There is a blood test that determines whether or not you have the disease. Before getting the blood test, however, they want to make sure a person is mentally prepared and supported, whatever the test results may be.

That’s a heavy burden. How do you stay so optimistic?

Sometimes I feel that if I test positive, I do not deserve certain things like love or children or just a life like everyone else because one day [Huntington’s disease] will take over me. But I truly believe everyone deserves to have anything and everything they want and strive for out of life, so why am I any different? That is why I try to stay as positive as I can, push myself and stay as strong as possible doing whatever I can to spread awareness and make sure this is the last generation with Huntington's Disease.

What advice do you have for Mudders who are looking to use WTM as a fundraising platform?

You have to love and care about what you are fundraising for. Tell people your story and be open and passionate because you really do not know who you will inspire. You have to love what you are doing. I love Tough Mudders. I love the challenge against myself, so it was easy to use this as my platform.