Creativity, humor, edgy, important – these are just some of the words we can use to describe our Featured Voice for August, Sean Quigg and his Spaghetti Arms project. Sean wanted to raise awareness in a clever way that explained Duchenne, but was also cool. He also wanted an excuse to follow some of his favorite bands. Thus, Spaghetti Arms was born, whose mission is to raise awareness of Duchenne through music and art events. Or as Sean puts it – making the curious aware. Whether hosting events, manning booths at some of the summer’s biggest musical festivals, selling shirts, or giving away stickers, Sean and his friends are educating their peers, opening eyes, and changing minds. Sean is an open and honest entrepreneur and artist, quickly becoming a prominent voice of his generation.

 

Meet Sean Quigg

PPMD caught up with Sean after a busy summer of traveling, pretty much like a rock star!

 

Sean, we’re so glad to connect. Tell us a little bit about yourself – How old are you? Where are you from? What are some of your interests?

I'm 18, from New Milford, CT and some of my interests are attending concerts, traveling, and graphic design. I've been to more concerts than I can remember, one time I counted how many bands I've seen and it was over 200, and that was two years ago. I've been to 32 states and plan on growing that number and adding countries to the count. For the past four years I've found great interest in graphic design, taken a few courses, and now count on it for a career.

 

Well we’ve seen some of your design work and think you’re well on your way!  When did you learn about Duchenne? How do you answer people’s questions about Duchenne? And what do you think is the biggest challenge as a person with Duchenne?

I'm not sure exactly when I was told I had Duchenne or when I learned about it, but it had to have been before the age of five. I remember knowing why I was falling, walking through the hallways in kindergarten. I never asked why something was happening, I knew it was for a reason - and I don't mean that in the 'everything happens for a reason way' but the 'my mom and dad told me about this' kind of way.

 

Usually, people’s questions are 'what happened?' Already uncomfortable, I have to tell them nothing happened. I tell them I was born with a disease, and usually don't get past saying Duchenne muscular dystrophy before they interrupt with 'OH YEAH! I know/knew someone with MS” or CP or anything other wheelchair bound disease they can think of. Then I tend to stop and listen because they're no longer interested in what 'happened' to me. One of my goals with Spaghetti Arms is to end the unknowing and close relation with any other disease. We will make the curious aware.

 

That’s huge and so critical. Tell us about Spaghetti Arms. How did it come about? What is your mission/goal? What have been some of your most satisfying/successful experiences with the project? It sounds like this summer has been action packed! Tell us about this summer, including the Warped Tour. What would you like to do next?

Spaghetti Arms came about from a mid-shower thought, last April. My best friend Lindsey thought it would be great to have a booth at Vans Warped Tour last summer. I knew we couldn't just show up and do our thing, so I took it upon myself to establish something as quickly as I could. Before I knew it we had a large following in the community, a benefit show at the local teen center, and we were off to Warped Tour in July.

 

Our mission is simply to raise awareness. Our parents learned about MD from the telethon, but nowadays kids are simply not interested and the telethon is much shorter. Many of my friends never even knew I had DMD and didn't feel comfortable asking. I'm not okay with people thinking I'm paralyzed and have upper arm strength  - hence the name Spaghetti Arms. I want people to know right away that this disease does not only affect the legs, but the entire body. And in the end our goal is to raise money for PPMD as we ourselves would simply not know what to do with the money we raise and it is safer in PPMD hands, going directly to research.

 

Overall, the most satisfying experience is just all the great people I have met and been granted the opportunity to interact with. At this summer’s Warped Tour we met a great guy Brian Marquis on the first day and by the end of our trip he set us up with a signing at our tent with “A Loss For Words,” which is one of the biggest things we've done, seeing as Warped Tour tweeted about us! I was in such euphoria when all of that was happening.

 

This summer our main event was Warped Tour. Just before the summer we attended Bamboozle in Asbury Park, NJ. There we're over 100,000 attendees throughout the weekend and it was great to be a part of an ocean-side event with names as big as Bon Jovi and Skrillex. I also got to spend three days with ten of my best friends. After that we had a bake sale at a large car show in our town and got welcomed back from Bamboozle. And before we knew it we were off to five dates on the Warped Tour, each day crazy and perfect in its own way.

 

Hartford, our home state definitely was our best day. We got the most donations, sold plenty of t-shirts, and had a signing. Now to end the season we will be attending a few more car shows and figuring out what to do on Halloween.

 

In the future, we have all already agreed we would love to do the entire Warped tour - all 40+ events. We met so many kind people, and did so well, it seems worth it. We just need to find some sort of sponsorship because my friends and family can't miss that many days of work. Our goal in the future is to continue attending events with our peers, raising awareness, and donating as much money as we can to PPMD. And to get bigger and bigger and bigger!

 

Wow, what an incredible and exhausting summer! And what ambition. Finally, if you could have dinner with any three people, real or fictitious, living or deceased, who would you choose and why?

  • Morgan Freeman, because I've forever had some crazy interest in him. He just seems like such a nice man. Recently I almost got in contact with him but it didn't work out.
  • Steve-O because he's crazy, lives on the edge and has had so many experiences he would be easy to talk to. Also he is now sober and vegan for the past few years. I'm vegan and it would just make dinner even better!
  • I'd say the Dalai Lama because I've heard how great it is to be in his presence, but I've seen enough interviews to be okay with skipping.
  • So last but not least, Oprah because of everything she has witnessed, spoken about, and come in contact with. She has had so many experiences and is one of the most powerful women. If I got the chance to tell her about Spaghetti Arms, I'd be king of New Milford.

 

She’d be lucky to have you! Thanks for talking to us Sean and thank you for all that you are doing to raise awareness. You and your friends are an amazing group – this community couldn’t have better teammates.

 

To learn more about Spaghetti Arms and to order your own t-shirt or other merchandise, visit SpaghettiArms.org and check out Spaghetti Arms on Facebook.

 







Will Nolan, Communications Director
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