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Quinn Nystrom
(Courtesy of ADA)
16-year-old Quinn Nystrom, of Brainerd, MN, is the new National Youth Advocate for the American Diabetes Association. For the next year, Quinn will travel the country, motivating hundreds of people to become more involved in diabetes advocacy. She will also meet with Members of Congress to petition them to allocate more money for diabetes research. Named National Youth Advocate at a conference in June, Quinn has spent the last eight weeks travelling to different camps for diabetic children motivating them to become diabetes youth advocates. Quinn is the third National Youth Advocate. The National Youth Advcoate program started in 2000, with Clare Rosenfeld of Eugene, OR, followed by Cullinan Williams of Cazenovia, NY, in 2001.
CureNow: How did you get started in advocacy?
My younger brother was diagnosed six years ago and he was diagnosed with Type 1 diabetes. So then my family got involved in school discrimination issues within our school district, we got involved in our local ADA walk, [and] things like that, once he got diagnosed. Then I got diagnosed about two years after him and we got involved even more.
Why did you want to be National Youth Advocate?
I felt that I had done everything I could at the community level. I had spoken at all the rodeo groups, I had gone around to all the classrooms at the school, gone to all of our local ADA walks, things like that. I really wanted to raise my platform to a national level so that I could reach more people.
What do you hope to accomplish this year as National Youth Advocate? What are your goals?
I really hope to motivate kids at my camp visits. I want to motivate them, to let them know that they can make a different. They may be young but people listen if they have something to say. I know that's something that I struggled through until people motivated me to do it. I want to talk to Congressional leaders and try to get increased funding for the NIH budget. I think that also motivating adults to get involved and just all around getting as many advocates as I can fighting for a cure.
Your brother also has diabetes, like you said, what did he think when you found out that you were going to be National Youth Advocate?
He was really excited. It's a cool relationship that me and my younger brother have because it's something that we both have to go through and it's something that we can relate to. I think he was very happy and proud that I had gotten it. Now he's like "I wanna get in. I wanna do it in a couple years." I think it's great and I think he will do it in a couple years. He was happy and excited that I got it, so was my older brother and my parents. Everyone in my community is very supportive.
For kids who want to be advocates, but don't know how, what tips can you give for getting started?
Well, if they don't know where to start, I would have them go to the diabetes.org (the American Diabetes Association) website. They have all the different information. If you're looking to send letters to Congressional leaders, they have sample letters on there.
Just getting involved in the local ADA walk, making up a school fundraiser, having a school walk for diabetes, mailing letters to the President for his support, going to your classrooms at your school, advocating other people to help the disease. I think those little things, if you add them up, make a really big thing.
Have you always been into advocacy or were you one of those people who hung in the background? Have you always wanted to advocate?
No. When I was diagnosed, I was thirteen and it was a big shock. I went into the big denial period that I think a lot of people go through. I didn't want people to know that I had diabetes, I was ashamed of it and people made fun of me and I just wanted to be like everyone else.
 (starting top, left) Mom, Dad, Quinn, Thor, and Will (Courtesy of ADA) |
How did you get out of it?
My mom made me go to a diabetes camp that summer. I got diagnosed in March and I went to camp in August. She threw my bag out of the car and I was like "I'm not going", because I thought it would be an education camp. Clare Rosenfeld actually came and visited that camp for her summer tour and really motivated us and really touched me to go make a difference, go and do something. It was really great because I don't think I would have applied for [the National Youth Advocate] if it wasn't for her. After that visit with her, I went back to school and then I didn't care if people knew I had diabetes. I was doing school fundraisers and educating people in classrooms. But before that, I was still afraid of what people would think of me if I said "Oh, I have diabetes". Now I'm definitely not afraid.
The funny thing is that I applied last year for that National Youth Advocate and I didn't get it. I tried again and I got it, and when I go to my camp visits it's a big message for me to say "You can try and you can try and you can try, and sometimes you're going to fail, but if you keep on trying, you're going to get it. You're going to make an impact and make a difference in this world." The ADA was like "Oh my gosh we were so glad to see your application back in because you were so close the year before." And I never knew any of that. I was so discouraged when I didn't get it.
What made you try again?
At first I wasn't going to. It was like the day before the deadline, and my mom was like "Come on, Quinn, just do it" and I was just like "I tried so hard last time and I didn't get it" and she was like "Come on, let's just try once more" and I thought "Okay, this is the last time I'm trying". I really wanted to do it because I wanted to impact people like Clare had impacted me in such a positive way. I still had the motivation, I just didn't like the rejection. It was funny because they called me on my three year anniversary [of my diagnosis].
So, when you're not advocating, what do you like to do for fun?
I love to play tennis, I love to figure skate. I figure skate competitively. I love to shop, hang out with my friends.
Has figure skating been difficult with your diabetes?
It was a struggle. Especially with a competition, you're really stressed out right before you go out. It's a struggle to be in tight control. I just went on the insulin pump in June and I usually have to disconnect because it's like "well, where do you put the pump?". I fall all the time with doing big jumps. You're moving so fast, it doesn't really stay in place, so I usually just disconnect for that little bit of time.
Which pump do you have?
I have the Minimed Paradigm
Do you like it?
I do, I haven't had any other pump so I don't really have anything to compare to. I think it's hard to get used to. Where do you put it in your clothes? But I'm getting used to it.
What advice do you have for newly diagnosed diabetics?
Really, just not to give up. I think a lot of newly diagnosed people feel like it's the end of the world, they don't know what they're going to do. There is life after this and you can turn something negative into something positive by going and making a difference in this world. Going and impacting your community, your school, your Congressman. Diabetes, yes it's a bad thing, but you can always turn it into a positive thing. You may not have chosen to get this disease but you do have a choice on how you handle this disease. I really think to turn your stumbling blocks into stepping stones. It's really up to you how you take it, either the victor or the victim. No one else can make that decision but you.
The National Youth Advocate is a big inspirational position. Who's your inspiration?
I think Nicole Johnson. I met her and I've read her book and I've followed her trek through the year. She's someone who's really motivated me to go make a difference and even after her reign, this is her full-time job, fighting for a cure. That's what she does. She's nothing like a beauty queen, like the stereotype. Yes, she gorgeous, but she's just as gorgeous on the outside as she is on the inside. Very compassionate, very nice, very giving and has that determination to find that cure. I think that that's absolutely wonderful. I think that's really wonderful of her.