We do this thing called the Live Ride…

For the 15th year in a row, The House of Harley-Davidson donated a motorcycle to the Muscular Dystrophy Association of Alaska. The bike will be raffled off with the winner drawn at 3pm, July 20th during the official Live Ride for MDA finale party at Denali Harley-Davidson in Wasilla.  Why would they do that? Why not just give them money? Or hold a regular fundraiser?

The answer is multifaceted but the point is this: Bikers enjoy helping children. By helping with the raffle for the motorcycle and by making it a biker event, we are able to connect the hearts of two unlikely types of people: the very tough and the very vulnerable.
The money raised helps to normalize the lives of Alaskan kids living with muscular dystrophy and all bikers involved spread awareness and help fund raise for MDA.
The Harley-Davidson motor company supports the Muscular Dystrophy Association on a national level for the same reason.
To keep myself and others focused on the REASON part of the Live Ride for MDA, I decided to learn more about the children who will benefit from the money we raise.

Meet Alice

Alice

Alice is 11 years old. Her birthday is in the beginning of December so she gets back to back (not too close) birthday then Christmas presents. She likes the colors pink purple and blue and her favorite food is cheese or pepperoni pizza. Her favorite animal is any kind of puppy.

When I rode to Alice’s house to interview her about her position as MDA ambassador for 2013, her house was the only one in the cul-de-sac with a driveway completely filled with colorful chalk drawings.

(Me) What do you like to do this summer besides chalk art Alice?

(Alice) “I like to ride bikes with my brothers and we go swimming at the Alaska club sometimes. I play golf in my backyard too.

(Me) Have you ever played golf at a golf course or mini golfing?

A: “I take lessons at the golf course in the First Tee of Alaska “

(Me) What’s the most fun thing you’ve done this summer in all this hot weather we’ve had?

A: “One of the funnest things this s ummer is our neighbor has a slip and slide and we got to play on it when it was hot!”

(Me) Have you ever been out of Alaska?

A: “Yes I’ve been to New Jersey, Florida, California, North Carolina…”

(Me) What was your favorite vacation?

A: “North Carolina because we had a family reunion and I went to the beach everyday.”

(Me) Have you ever been to summer camp and can you tell me about anything fun you all do at camp”

A: “Yes actually I go to girl scouts and the MDA one. At MDA camp they have casino night when we play poker. We go swimming at the high school by camp too. There’s also a VIP night where we meet some sponsors and parents and we eat food from Carrs. It’s fun” Alice confirmed that she’ll get to go to the MDA camp again this year so I asked what she looks forward to most.

A: “Well it’s a superhero theme. I don’t really have a favorite super hero but we get to dress up. I guess I should start making my costume.”

I asked if I should dress up for the sponsor night and both her and her mom agreed that I need a cape. I asked Alice who her real life hero was.

A: “My brothers are sort of like heroes. John (her 9 year old brother) is my hero. They’re both younger than me but John is always happy so he’s my hero.”

(Me) What do you think of bikers?

A: “I think they’re really intimidating, sort of tough that’s how I think of them.”

I asked if she thought I looked tough and she shook her head no.

A: “I really want to ride a motorcycle sometime, really really want to!”

Her mom indicated that they’d had this discussion many times. We talked a bit about safety, the possibility of a sidecar ride, the risk of other drivers and the difference between rural and city roads. I hope to help facilitate Alice’s wish coming true sometime this summer!

(Me) What is your experience as an MDA Ambassador like?

A: “I feel pretty famous in Alaska with all the stuff I get to do. I get to go places and speak, mostly about camp and stuff. I don’t mind giving speeches; it’s really not too scary or anything. The last time I got to go eat lunch at the Crow’s Nest restaurant with a bunch of firefighters.”

(Me) Have you ever been on TV?

A: “I was on TV for the telethon and to talk about camp.”

(Me) Is there anything else she’d like to say to the bikers and folks reading this interview?

A: “I want to say thank you because you know, they’re raising money and helping us out and I want to ask them if I can ride a motorcycle.”

 Alice is a manifesting carrier of Duchenne Muscular Dystrophy, a form of muscle disease that almost exclusively affects males like her 9-year-old brother John. In fact, Alice is the only female in Alaska with Duchenne.

Meet Austin

Austin

Austin is 16 years old. His favorite color is green and he likes Taco King & Qdoba food. He reads comics, wants to start getting into gardening and has been hiking and hanging out with his cousins this summer. At the end of July he’ll be heading to summer camp for a week which he looks forward to every year. I interviewed Austin to get his perspective on the summer camp, bikers and what it’s like being an MDA ambassador. He came and met with me in the coffee area at the Harley shop.

(Austin) “I got the lucky end of the stick because I can walk and talk and only have a small percentage of MD but for a lot of these kids who are in wheelchairs full time, they get to do things like ride horses, go swimming, go canoeing and meet other kids with a life in common with them. It’s really fun to see other kids come out of their shell during the week. They don’t really talk about their disease. Usually they’re jacked up on fruit punch being kids!”

I asked him about the layout of the camp.

A: “it’s not like actual “camping” camping because we stay in cabins. There girls cabins and boys cabins and a big lodge”

(Me) Do you guys ever play tricks on the girl’s cabin?

A: “The little kids always want to do that kind of stuff and I’m like, suuuure, go for it haha”

(Me) How many volunteers help with the camp?

A: “There are a lot of volunteers because each kid has their own counselor. Sometimes firefighter will volunteer – they usually take care of the kids who are a little more challenging to work with due to their condition. There are always some college students too.”

During my Q & A I asked Austin if he had any heroes.

A: “My Grandmother is definitely my hero because she’s had to sacrifice so much to care for me. She loves to go and do things to support MDA as much as I do.”

(Me) Does she help with the summer camp?

A: “The Summer camp is like her week off from driving me everywhere. She does come to the sponsor night though to get to know everyone and thank the people who help out”

I shared my plans to attend sponsor night at the camp with the HOG group and asked him what he thought of bikers.

A: “Bikers are intimidating. I think there are two types of stereotypical bikers. The big tough guys like on sons of anarchy or something that aren’t very nice and then the guys who look tough but would give you the American flag emblazoned shirt off their back. They used to bring some bikes down to the Birchwood airstrip so we could ride in the side cars. It was awesome. It’s been raining at camp the last couple years though so we’re really hoping for good weather.”

A few people bring show cars to the airstrip for the day Austin was referring to (Chrome and Colors night).

A: “It’s ok that they couldn’t bring the bike though because there were so many corvettes!”

I wanted to know what the words “MDA Ambassador” actually meant so I asked Austin what the job entails and if he’s gotten to do anything in that position that he might not have normally done as a kid.

A: “To be an MDA Ambassador means that every time there’s an event I’m there just meeting people and thanking them. For me having the ability to walk and think and talk is a blessing because it makes people realize that not everybody who has MD is laying in a hospital bed. It helps people understand that you could have the disease and not even know it. Different kids have different levels of it and in all different ways. So it’s spreading awareness. During the telethon they really focus on the “find a cure” thing and the really really important but for e what’s more important is helping people who have the disease lead a really great life and helping them out in any way we can.”

I told him that was one of the reasons I wanted to conduct the interview. To get to know what his unique story is. I asked him if there were any memorable moments in his career as an MDA ambassador.

A: “Being an Ambassador, going to the lock up at Sullivans and seeing prominent figures in the community taking time out of their lives and spending money because they really care about this was amazing. Either they or one of their connections or someone in their family was influenced by MD enough for them to want to help. The other moment being an ambassador gave me that I wouldn’t have had otherwise was when we had the ambassador dinner and going up to give a speech. Looking out at how many people came it was awesome even though I fumbled the speech haha”

After sharing some of my own public speaking mishaps, I asked what else he wanted to tell the motorcycle community or anyone reading this article.

A: “Just thank all of you for helping out and donating not just money but time out of your life for all this stuff”

Austin was diagnosed as a baby with myotonic dystrophy, the same form of muscle disease from which his father and grandfather passed away, and he’s highly dedicated to MDA’s fight for cures. – MDA Alaska facebook page

For more information about the Live Ride for MDA click here

To purchase a raffle or ride ticket click here

To like MDA on Facebook click here!

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One Response to We do this thing called the Live Ride…

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