ALS Alert – Interview with Matt

ALSAlert: A Newsletter from the Robert Packard Center for ALS Research at John Hopkins: Spring/Summer 2005 

A Friend Indeed

Host with the Most

Friendship is as important to Matt White as a roof over his head. In fact, when White who is single—bought a spacious home on Florida’s southwest coast two years ago, he had his friends in mind. “I wanted them to come and enjoy themselves,” he says.

Every week, using a wheelchair-attached motorized rod and reel his friends crafted—based on his own design—White fishes with his buddies. He had to give up golf, his greatest passion, when he could no longer hold the clubs. White, 36, was diagnosed with ALS in January, 2000.

Since moving to Florida, White has played host to myriad friends and family. One chum, Dan Chancellor, has known White since their fraternity days in the 1980s at Butler University in
Indianapolis. Says Chancellor, “Matt’s always been upbeat.”

Until 2003, White was a sales manager at Chicago’s alternative rock station, Q101. His former boss, Chuck DuCoty, now chief operating officer of NRG Media inCedar Rapids, Iowa, says White generated top revenues. “What strikes you about Matt is that he’s so serene about his fate. I would be raging at the gods, but he has an amazing spirit.”

More on Matt White
Matt White, 38, was diagnosed with ALS in 2000. Since then, he’s rallied support for ALS research through his Matt White Cure ALS Foundation, raising thousands of dollars for thePackard
Center. His story appears here, but we thought readers might want to learn more about White’s approach to living with ALS.

A few years back, the station sponsored a benefit for White’s Cure ALS Foundation, which supports ALS research, including the Packard Center’s. Saddened to hear his good friend was sick, Chancellor, a financial consultant in Indianapolis, decided to build on that event’s success. Last year, he and friends organized an ALS walk in Evansville, Indiana, raising $60,000 for ALS research.

Now Chancellor’s spearheading a golf tourney, set for October 5, outside Indianapolis. Former Vice President Dan Quayle will be there, providing a celebrity boost. Half the proceeds will benefit the Center.

Since his diagnosis, White has helped coordinate fund raisers for his foundation, totaling $100,000. Good times with friends sustain him, but now, White says, “we’re not afraid to talk about things young men don’t usually discuss—life, happiness, love and mortality.

A Friend Indeed

More on Matt White

Matt White, 38, was diagnosed with ALS in 2000. Since then, he’s rallied support for ALS research through his Matt White Cure ALS Foundation, raising thousands of dollars for thePackard Center. His story appears in the current issue of ALS Alert, but we thought readers might want to learn more about White’s approach to living with ALS. Below are his responses to my interview questions, which he typed with his toes. –Judy Minkove

Describe how you were raised and the people who had the greatest influence on you.

I was raised in a small farm town in northern Indiana. I was most influenced by my parents, especially by my father who taught me a lot through his work ethic and never- ending curiosity.

What did you major in at Butler and when did you graduate?

 Radio and Television, Class of 1989.

Did you deliberately choose a career in radio? If so, why?

Yes. I chose radio sales as a career because I felt it gave me the best opportunity to utilize what I thought were my greatest skills. Fortunately, I was right. I wanted a career in which I would be compensated based solely on my performance, not on someone else’s opinion of my performance. The fast pace and pressure of a commission-only occupation suited my competitive and independent personality.

When were you diagnosed?

I first had weakness in my left hand during the spring of 1997. The diagnosis of ALS was confirmed in the January of 2000. My doctor, Scott Heller, was at Northwestern University Medical Center in downtown Chicago.

Had you heard of ALS before you were diagnosed? If so, in what context?

 I had heard of Lou Gehrig’s disease, but not ALS. I knew only that it was some kind of debilitating disease with no cure, and that it was fatal in a very short period of time.

How did you respond to the news?

I decided in the time that I had left to play golf as long as possible, travel as long as possible and raise as much money as possible for the nonprofit charity I set up, The Matt White Cure ALS Foundation. In the two years I was still able to swing a golf club, I took separate trips to Scotland and Ireland to play golf on the courses I had always dreamed of playing. I took multiple trips throughout the U.S., playing the top ranked courses. One of my favorite trips included seven courses over eight days stretching from Columbus, Ohio to Long Island and included rounds at Muirfield Village, Oakmont, Merion,Pine Valley, Winged Foot and Shinnecock Hills. My final round was at Cypress Point, where I counted every shot and carded a 186.Other travels really started after I was done playing golf. Again, it was to places I had always wanted to visit. I traveled across the Northern Mediterranean, from Croatia to Portugal, and I went to Hong Kong and Beijing to see the Great Wall of China. I took a helicopter trip to the bottom of the Grand Canyon and saw my alma mater play basketball at Cameron Indoor Stadium against Duke. I traveled to New York to see the first World Series game after 9/11, to Indianapolis to watch my beloved Pacers in an NBA finals game, and I went to Super Bowls in Orlando and San Diego. I didn’t just play around though. Throughout this entire time I was very busy coordinating and conducting various fund raisers for the Matt White Cure ALS Foundation, ultimately raising close to $400,000, with the help of generous friends and business associates.

How has your illness changed your life? The illness has changed me from a physical standpoint only. It has not changed who I am. Because I am no longer able to perform the things required in my job, I am retired. Now I find ways to enjoy myself without needing to use the physical strength I once needed for my favorite hobbies. I’ve invented two different fishing reels that I can operate almost entirely by myself using only my feet, which I still have the ability to use. I live in a pristine area of Southwest Florida that has a tremendous variety and abundance of fish. Within minutes I can be fishing for kingfish in the gulf or speckled trout on the grass flats that surround this area. I have become a mean online scrabble player, and you don’t want to sit down at a poker table with me unless you are prepared to lose big time. I’ve grown much more appreciative of all the wonderful things our world and our lives have to offer. I’ve grown closer to my friends and closer to my family. Since I’ve been forced into retirement, I’ve found lots of great ways to entertain and contribute every day.

What’s been the hardest part?

Dealing with the loss of my physical ability to do the things I enjoyed, like running and playing golf. While I certainly have found great substitutes for those activities, there is no way to replace the feeling of running really fast or hitting the perfect 3 iron into the wind and on to the green. It has also been difficult adjusting to everything I do, taking just a little more time than it used to, due to the fact that someone else has to help me. It would be nice to sit down and write a note to someone, or to wake up and pop out of bed, but those are really minor inconveniences in the whole scheme of things.

Has your relationship with your friends changed since you’ve gotten sick?

I’ve spent more time with my closest friends than I had before. We now have more real conversations than we had ever had before. We always had a lot of fun together and still do, but now we are not afraid to discuss the type of things that young people—and especially young men—do not talk about with each other: life, death, happiness, love and mortality. Most of them tell me that I’ve been an inspiration to them. They see me as a symbol of courage and strength in the face of overwhelming adversity. This actually humbles and surprises me because I don’t really feel like I am overcoming anything all that tremendous. As I find doing things more difficult, I simply figure out ways to make them more easy. If things just can’t be done, then I’ll move on and find something else to do.

Describe your friendship with Dan Chancellor and how you feel about the upcoming golf tournament he’s organizing to raise money for ALS research. Are you planning to attend?

Dan and I have been friends for 20 years, and in that time we’ve done everything together. I think it’s great that Dan is using his ability and talent to rally his friends and business associates in this worthwhile cause. Dan is such a generous person that I’m sure it’s easy for him to ask for their generosity in return. I don’t know if I will attend the event, I sure would like to.

What attracted you to the game of golf, and how many years did you play?

I started playing when I was 10, with a woman’s 7 iron, 9 iron and putter and I stopped playing when I was 35, so I played for 25 years. I love golf for the independence and constant challenge that it presents. You either win or lose on your own, not helped or hurt by anyone except yourself. I also love the fact that golf is a game of honor. The rules say you have to call penalties on yourself. There are numerous moments of decision throughout a round when you are tempted to challenge that rule, and it is in those moments that you decide what type of person you are.

Where did you first learn about the
PackardCenter at Johns Hopkins, and what were your impressions of their work?

The Matt White Cure ALS Foundation’s sole purpose is to raise money to be distributed to the world’s best ALS research centers. To that end, I’ve spent hours determining who those best centers are. It didn’t take a lot of research to realize that thePackard Center was making the biggest investment in research, utilizing the most doctors and researchers, and making the most advances towards a cure for ALS.

What advice do you have for other people in your situation?

Don’t stop doing the things you enjoy, and never stop trying new things. People in my situation also need to know that ALS does not have to be fatal. There is life on life support, far beyond what I had ever imagined. 


2 Responses to “ALS Alert – Interview with Matt”

  1. Stephanie Grimm Says:


    My name is Stephanie Grimm & I have been a part of your pool for a while. I am being audited for 2006 and 2007.

    I am asking if you could have the foundation write me an e-mail with my donation. For 2006 I have a canceled check for $300 to Steve Scanner and one for $160 for Hershel (second half). I have expressed my donation as $150 + $80 and they will not except the check without a letter since they were not made out to the foundation. I will look up my 2007 check later unless you know how much I had. It is Mom’s Team!

    Thank you!

    5. $50 of each entry fee will be donated to the Matt White CureALS Foundation. To learn more about Matt and his efforts to find a cure to this terrible disease, please visit

    Stephanie Grimm
    4540 Cedar Hill Dr
    Batavia, OH 45103
    Work (304) 759-3603 Cell (513) 235-9560

  2. Tatiana Zavialova Says:

    My spouse and I definitely think that this short article was highly beautiful. You’re definitely going to appreciate this quote. – “There is no pleasure in having nothing to do; the fun is in having lots to do and not doing it.” ~ Mary Wilson Little

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