Thanks for Answering

Your Responses to the Quest Survey

Thanks to those of you who answered the Quest readership questionnaire announced in the March-April issue. The results were helpful and informative to the Quest staff.

In general, you seem to like what we’re doing, but you weren’t shy about suggesting what we could do better.

Here are a few of the questions your responses raised, and their answers.

1. Why don’t you have more news about ALS?

We have a separate magazine that thoroughly covers ALS, the MDA/ALS Newsmagazine. If you have ALS and aren’t receiving the monthly newsmagazine, let your local MDA health care service coordinator know.

Some of the stories in Quest apply to neuromuscular disease issues in general, including ALS.

2. How about more reporting on local MDA events?

Because Quest is national in scope, and because hundreds of MDA events are held each year in communities across the country, we simply don’t have the space to mention them. Check with your local MDA office to be sure you’re receiving your local newsletter or other mailings for announcements of events in your area.

3. Why does Quest have so many ads for expensive products?

Many readers tell us they find the ads in Quest informative. They show products you may need and tell you where to get more information. They touch on many of the key areas in living with neuromuscular diseases — mobility, transportation, communication, bathroom convenience and accessibility, respiration, travel, sleep, transfers and much more.

Of course, the primary reason for ads is economic. Magazines sell ad space, and the income from advertisers helps pay for printing and mailing. Since 1995, ads in Quest have brought in more than $2.7 million for MDA, which helps us to produce Quest and deliver it to you.

When you do contact a Quest advertiser, please be sure to say you saw the ad in Quest. That kind of feedback encourages those companies to invest more in our magazine.

4. Why don’t you write more about my disease?

With more than 40 diseases in MDA’s program, and only six issues of Quest per year, you can see that it’s logistically impossible to do a major feature on each disease very often. Our larger articles on research and medical topics usually are chosen because there’s a significant new development in a disease, or because new insights apply to more than one disease.

Every issue of Quest reports new findings in “Research Updates,” so be sure to look over that department for mentions of the disorder that interests you. If you haven’t seen a “Research Updates” item about your disease in a while, that’s because the scientists haven’t reported anything new — yet. When they do, you’ll read about it in Quest or the MDA/ALS Newsmagazine.

To get information about research developments even sooner, go to www.mda.org and look under “Research News.”

5. Why not make Quest available free to people like me with muscular dystrophy, and sell it in more places?

Quest is absolutely free to everyone who’s registered with MDA. If you aren’t getting your copy by mail, notify your local office. They’re responsible for getting correct, updated address information to us.

The subject matter is specialized and wouldn’t appeal to a mass audience, so we don’t place the magazine on newsstands. Quest is available at your local MDA office and your MDA clinic. If you don’t see it there, ask.

Back issues of Quest are also available online.

The lovely thing about a magazine is that you can hold onto it for as long as you wish. If a story doesn’t apply to your situation now, you may still want to read it later. Or you can flag articles that you’d like to reread, or ads for products that may be needed in the future.

You can also find a list of past Quest stories on specific subject areas at www.mda.org/publications/Quest/q_topic.html. Click on “Stories by Topic.” There you’ll see a list of topics, including research, medical care, education, careers, family issues, equipment and products, and that list will link you to every article we’ve done in that subject area.

Quest is free to those with any of the neuromuscular diseases in MDA’s program. Subscriptions are $15 per year for others, $24 per year outside the United States.

6. What is Quest Extra?

Asked which departments in Quest you most often read, many of you indicated you weren’t familiar with Quest Extra. It’s a feature we started last year as a way of presenting stories that didn’t fit in the limited space of Quest. Instead of printing the stories in the magazine’s pages, we put them online at www.mda.org/publications/Quest/extra/ — giving you an extra serving of Quest.

For a little taste, take a look at this issue’s Quest Extra story about goats, monkeys, and other service animals that aren’t dogs. Past issues — all still online — have featured e-books, publishing your life story, IEP preparations and more.

If you don’t have access to the Internet, but you’d like to read a Quest Extra story, you can ask at your local MDA office for someone to print it out and send it to you. You can also send an e-mail to publications@mdausa.org or call the Publications Department at (520) 529-2000, and ask for a printed copy.

One regular feature of Quest Extra is “Do-It-Yourself,” which many of you asked to see more of. Keep those suggestions coming about simple solutions or homemade devices to solve your everyday challenges.

7. Can you give us more stories about real people who are dealing with neuromuscular diseases in real life?

We write about “real people” as much as possible. Quest usually looks for those whose stories are a little different or special. And when we write about subject areas such as parenting or job hunting, we interview people who’ve had experiences in those areas.

Of course, the “real people” question works both ways. Reading about someone else’s coping strategies may inspire you; by the same token, your experiences can inform other readers.

So keep an eye out for “Quest Needs Your Help” at www.mda.org/publications/Quest/q_helpquest.html and “Looking Ahead in Quest” on the magazine’s MDA Mailbag page to see what experiences we’ve scheduled to report on.

You’re a real person. Let’s hear from you.