Sunday, March 18, 2012

A Ride With Matt…Huntington’s Disease Awareness – Part 1 – My Take.

Back in the early 80’s, our family was set to move again.  We did that often!  My Dad went ahead as always and found a very quaint little town in Upstate New York called Palmyra.  I had no idea then that I would always call this place “home” in my heart at some level.  Friendliest people I’ve ever met and I stay in touch with a lot of them on a daily basis.  Yes, part of my heart is still there and will always be.  

Recently I’ve been drawn to a story that has me moved almost beyond words.  It surrounds a family that I was fortunate enough to know during my years in Palmyra, and it involves a topic that is paramount, yet misunderstood.  The unknown is frightening to all of us.  Here is one “unknown” that should be heard, and this family is ready to put a name with a disease that has plagued them for 4 generations.  Huntington’s Disease.

Fade back 30 years, we moved to Palmyra.  I distinctly remember seeing “the town drunk” and thinking how odd it was to have one of those in a town like this.  I mean, he stumbled around the streets, he slurred his speech, and he twitched.  Of course he was the town drunk.  My father concurred, out of ignorance, both his and my own.  Even Mayberry had one.  Why not Palmyra?

As the years unfolded, I met the Austins.  I had classes with Annaliese, and we graduated together.  She had siblings, and they were many.  Her mother taught me in English and so much more!  They were all active in the community.  This was an upstanding family.  And I realized that the “town drunk” was Mrs. Austin’s husband, the Austin kid’s father.  How could this be?

You see, he was NOT the “town drunk” at all.  No, he was plagued with Huntington’s Disease, an unforgiveable, incurable disease that eventually took his life.  It had taken his father’s life.  And unfortunately, it later took his son Andy’s life.  And Andy had a son.  That son’s name is Matt.  Matt is 21 and is plagued with this disease.  According to the “books”, Matt doesn’t have very long to live.  That’s how this goes.  You are diagnosed, you twitch, you slur, your step is stumbled, you’re angry A LOT and you die.  And yet we, the masses, don’t get it at all!

Matt and his family have banned together and A Ride With Matt will be amazing!  There will be a cross-county bike ride.  There will be awareness.  There will be amazing funds raised to figure out WHY this happens and HOW it can be “fixed”.  You can donate by clicking on that link I just provided!  

This is a cancer people.  We need to understand.  We need to support this cause because what this family is doing is AMAZING!  Within the coming week, I will share with you the personal account of my friend, Annaliese.  She knows the sting of loss.  She understands that her own children are at risk.  Her voice should be heard!  Will you listen?

You need to follow this story.  You need to take action.  You need to help raise awareness.  This is real and not as isolated as you might think. Last weekend, I had the opportunity to meet a “friend” that I had known forever through connections in Palmyra.  And lo and behold, her husband and his sister have also been plagued with this disease.  I met them. They were humans and just years ago, they were “normal” like you and I.  How can this be happening?  Why are we not aware?  What can we do?  Stay tuned for more.  YOU can do something!

Please watch the video  for more details on Matt and his ride.  And please do stay tuned because I will be sharing the family’s personal thoughts very soon and I will be following this ride.  Will you?


  1. Thank you Christy so much for supporting our ride, our family, our race to awareness and the documentary that will follow. I was embarrassed by the fact that everyone thought my Dad was the "town drunk". My dad had a tough life, his father, my grandfather, was put into a state mental institution because no one knew he had HD when my dad was 8 years old. His family was poor and misunderstood. He was quite the athlete, had got 14 varsity letters in high school. He went off to Korea after high school and did 2 tours in the Navy as a radio operator. Came back went to college for awhile then after several jobs worked at Mobil Chemical for 20 years. Working his way up from a factory worker to being in charge of quality control, an office job. Dress shirt and tie everyday. After 20 years HD forced him to leave the job he loved.

    Yes, he was angry at having HD. Of having it take everything he had worked for away. His job, his grace, his great sense of humor, his marriage , his life. He was so used to working everyday, and proud to be a provider he went to a vocational job, cutting out circuit broads with mentally and physically handicapped people. He would get a "short" blue school bus everyday and go to work. And after that come to all of our football, basketball, softball and soccer games because he was proud of us. He swallowed his pride everyday to feel "useful".

    I did not understand my father when I was young, I was afraid of him, but I loved him. We took the most memorial camping trips as kids to Canada and the Thousand Islands. Times when HD didn't seem to dominate our every breath. But all that changed. It began to unravel the very fabric of our lifes. At sixteen I came home one day and found he and my mother in a fist fight in our kitchen. I picked him up and threw him out of our house. He moved in with my grandmother after that. My heart broke that day, I couldn't make any sense of any of it.

    It wasn't till I got older did I come to understand all he did for us. How he suffered, alone. He moved into the VA hospital a year later and spent the rest of his life there.

    I went to visit him when I was 18 years old with my mother, right when I started Nazareth college. He had know idea who I was, again my heart was broken. I moved away from Palmyra later that year. I dropped out of college, got a motorcycle and started traveling the country. He had told me once he hoped I would travel and see the world like he did. I needed to get away and discover the world outside of HD and small town Palmyra.

    Many trips and life experiences later I came home for my 10 year reunion. I had gone back to school and graduated with honors, seen most of the US on my motorcycle, traveled to Europe and south east Asia. The day before I left I went to the VA to see my dad. I got to his room and he was pretty much in a coma. He weight around 100 pounds, he hadn't been able to feed himself for years. He had a feeding tube in his stomach, a catheter and in basically a diaper. He seemed peaceful for the first time in my life. I began to tell him about my life, my loves, my loses, travels, adventures and my dreams. I also told him I was proud he was my father. I held his hand and told him it was time to move on, and thanked him for staying around long enough for me to come tell him that I love him.

    I flew back to San Francisco that night and 2 days later he passed away. That was the life I knew of the man that was the "town drunk".

    Several years before my Dad passed away my oldest brother Andy, who I idolized, was diagnoised
    with HD........and that's another story.

    thank you again Christy for being a great friend.

    Adam Austin

  2. I've read a lot about your father in the past few weeks. He was an amazing man! My only regret is that the masses do not understand what this disease takes from a man, from his wife, from his children. The misconception is so ugly and needs to be changed. That was the 80's....we SHOULD have moved on, we SHOULD be advanced. We have NOT. Still today, this is an unknown in our communities and people like your father, like your family, are shunned and embarrassed. YOU and your family will make amazing strides. I'm proud to know all of you and although I came to understand MY ignorance back then, I'm humbled to know how ignorant I really was in light of my recent findings. Be sure to see what your sister wrote which I will be sharing soon. I'm having trouble putting my thoughts and feelings together since reading it. Y'all are amazing! Matt's courage is amazing. I have no other words...and rarely am I at a loss. AMAZING!

  3. Christy,

    Thanks so much for sharing this story and the truth about Huntington's. I'll be sure to send my readers over to learn more, as well. My best to Matt and his uncle, as they make this journey. Praying for their safety and that they will be "heard" in all the ways that can help to make a difference in the search for causes and a cure.

  4. What a wonderful thing Matt is doing to bring awareness to this disease! Thanks for sharing Christy!

  5. Thank you so much Christy for helping to spread this story and bring awareness to HD! My mother passed away at 59 from the disease as was her fathers fate as well and her sister is living her battle now. I am from Macedon and also was friends with Annaliese and was aware of her dad's illness. At that same time my grandfather was sick with a disease that his father and brothers also had, but no one bothered to give it a name. Before my grandfather died, my uncle had genetic testing done to put a name with the disease, HD. At that time my mother was already symptomatic and diagnosed with HD. I was newly married, living in Texas and scared out of mind for what this meant for me and my future as a wife and the mother I always wanted to be. I did a lot of reading and talked to a lot of people who were going to such extremes in their desire not to pass on the gene. At that time there happened to be an HD Conference in Rochester that I decided to fly home for. There I ran into my old friend Annaliese and Mrs Austin who listened and helped this poor confused girl more than they could ever know.

    So thank you again for helping bring awareness!

    Kim Pullara-Fennelly

  6. Adam, I knew your Dad was not the "town drunk", but was aware that many people perceived him that way. Andy and I had conversations about that and as he explained his condition to me, I felt deeply for your family, as I have told you. It was a matter of confusion, ignorance and lack of awareness for most. My Dad, also worked at Mobil Chemical and knew your Dad. He had nothing but good things to say about Fran, even through the worst of times. I am saddened to learn of Matt's diagnosis. I did not realize that when I first posted on "A Ride WIth Matt"~~I am amazed and speechless~~This is so inspiring, heartfelt and speaks of nothing but truth, love and life~~I am so glad you got to tell your Father how you felt about him and your life~~there is alot of deep soul searching, strength, family love and forgiveness in this story~~You and Matt are examples of what the power of a strong family means and how you can make a difference~~I will be on this ride with you all the way, in spirit~~

  7. How can we help?? This is heartbreaking.

  8. Wow! What a wonderful cause and how wonderful of you to post this for all of us to learn more about it!

  9. Jen - I was remiss and did not link up to the donation page. I have corrected that. Thank you so much for bringing this up. Click on the "A Ride With Matt" link in the post and you will be taken to their site where you can make a donation. And thank you! Also any shares would be incredible!

  10. Kim - thank you for sharing. I'm sorry for your losses and had no idea. I've been truly inspired by all of this and want to help! And Mrs. Austin was such an amazing force in my life. I truly do feel blessed to know this whole family!

  11. Christy, what a beautiful tribute to Annaliese and her family, and I will help raise awareness for Matt's Ride everywhere I can!

  12. Thanks Jules! And please come back to visit (actually, I'll send you the link). Annaliese wrote the most heart-wrenching guest post that I am working with now (one or 2 posts...not sure yet). I'll be sharing it soon as soon as I stop crying. I had no idea. I knew of the illness, I learned the truth, but I never knew the "behind the scenes" story of this amazing family!

  13. Thanks for posting this. It is a very little-known disease and I thank you for shedding light on it. This is the disease singer Woody Guthrie died of.

  14. Thanks for sharing & enlightening me on the cause & the disease! I wish there was a cure! So brave of them to make the ride to bring more awareness to the disease.

  15. We have had a lot of outside offers to help get A Ride With Matt out there and supported. We are starting weekly conference calls Sunday nights at 6pm PST to discuss involvement. E-mail [email protected] if you want to participate and we'll send you the call-in information. Thanks!

  16. Jen, we are also starting up weekly conference calls Sunday nights at 6pm PST to discuss ways in which people can help. E-mail [email protected] with your information and we'll send you the call-in information. Thanks!

  17. Deb (Allen) & Tom KlemannMay 8, 2012 5:43 PM

    Thank you for such a wonderful tribute to Matt, Adam, Andy, and Fran. My family grew up with the Austins - All their names started with A, all of ours started with D! That's the connection that grew with Mom & Dad, who went to school with Fran and Anita. I have pictures of their senior trip - they had so much fun and so little awareness of the heart ache ahead. They all have gone on to their great reward - without pain and struggle - but have left us with smiles and memories of growing together. I also work at Mobil, and although there was much misunderstanding about Fran's disease, there was a great deal of concern about his safety. Co-workers loved him, and were so helpless to provide him what he needed. Palmyra loved the Austins, and were as helpless in the years of Fran's fight. Matt's ride is a beginning of that understanding, in spite of all of the years that have passed. Adam and Matt will surely be in our prayers during this ride, and we hope they have an absolute BLAST!! together! Rally around them, support their cause! Palmyrans . . . support them on May 19!

  18. Thank YOU for sharing your personal connection as well. The Austins have always been an awesome family and I love that they are putting a name with this beast and bringing awareness with this ride! Palmyra is really stepping it up a notch (as always) with their support and I'm still proud to call that place my "home" (in my heart anyway)!

  19. Hey, Christy, I remember the "town drunk" only too well. One day when I was working at the Sunday Shop (Mr. K's) a man came in looking pretty shaken up, saying that as he'd been driving up, he almost hit some drunk guy who was stumbling all over the side of the road. When the guy left, the stumbling man came into the shop, and it was Mr. Austin. By that point I knew Annaliese and Adam well enough to know that he wasn't drunk, of course. He ordered a small sundae (I think it was a Mexican Sundae), but I gave him the biggest container I could find and filled it with ice cream, chocolate sauce, peanuts and whipped cream (Mr. K was not overly happy with me).
    Fast forward a couple of years later, and my brother died. That's when I got to know Aaron, who recorded the tape that Jim Caringi and I made in his honor. I really didn't know Aaron at all before that, but he offered his time and services so openly, so absolutely. We could never have made that tape without his incredible generosity, and it is something I have appreciated so much ever since. But that's just Aaron - and all of the Austins. Incredibly giving people. It was nice to go to the benefit for Matt yesterday and be able, in a small way, to partly pay back that generosity, and pay it forward at the same time.

  20. Thanks for sharing your story here Mike. Glad you got to attend the benefit this weekend. I really wish I could have been there. My daughter graduated so it wasn't possible but I was definitely there in spirit!


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