Feedback from Quest readers and the MDA community
You could be in Quest! We want to hear from you — share your ideas, experiences and comments with other Quest readers. To share your comments and feedback, write to: Mailbag, 3300 E. Sunrise Drive, Tucson, AZ 85718-3299. Or email letters to firstname.lastname@example.org with "mailbag" or "letter to the editor" in the subject line. Letters must be signed and contain a daytime phone number, city and state, and be no more than 250 words. Letters may be edited for space, and some may be run online only. Be sure to read below for details on updating your Quest subscription.
Letters to the Editor:
A very good article about Raymond [Walter, from “A Life Full of Learning” in the Winter 2014 issue]. An exceptional student with a great father! I had two sons with Duchenne muscular dystrophy (DMD). I drove them to their colleges. My nephew helped one, and the other one had an aide. My older son insisted I go to college, too. So I ended up with an elementary education degree. They died in 1993 and 1996. I became a teacher because of them!
— Beatrice Ingersoll, Albany, Ill.
Kudos for Quest
I love reading Quest magazine online. My son was recently diagnosed with Duchenne muscular dystrophy, and without the articles I have read, I wouldn’t know half of what I know now because of Quest. I can get real insight from families dealing with the same issues, and it also provides hope for my family and me during this difficult time.
— Angela, Kaukauna, Wis.
I love the online Quest but still appreciate the printed magazine. I hope you continue to provide it for the many folks without computer access. I look forward to each issue.
— Richard A. Wheeler, Denair, Calif.
I have been diagnosed with both limb-girdle muscular dystrophy and mitochondrial myopathy, and it is confusing. Your magazine gives me good information while reassuring me that the many forms of MD are not always an exact science. In other words, I know I am not alone. Thank you.
— Jean S., Wilbraham, Mass.
I always find Quest informative. Since I have Charcot-Marie-Tooth disease (CMT), I especially concentrate on the CMT articles. I’m always praying for the magic drug that will stop the progression that has made me less and less mobile. I also enjoy researching the new products that are featured and the advertisements.
— Jay Ludwig, Murrells Inlet, S.C.
Room to improve
The contemporary and more visually dynamic resource that is the new Quest has, for me, one single drawback: With its elegant, minuscule typefaces and light ink, I can’t read it. The [Winter] issue had to go directly on the pile. But I’d prefer online only anyhow.
— Fletcher Barton, Yonkers, N.Y.
Art Director’s note: Thank you for your feedback on the typeface size. We have increased it for easier reading. You can also download this and every issue in PDF form.
What about EDMD?
I have been an avid reader of Quest for many years now. My daughter Sophie, who is going to be 15 years old very soon, has had Emery-Dreifuss muscular dystrophy (EDMD) since birth. Why is it that you never have any information about this disease? I know that it’s a rare form, but I’m upset that I can’t read about any new updates or findings in your magazine. It has all the other types of muscular dystrophy. I keep searching for articles about Emery-Dreifuss but with no success.
As we find out that more and more kids have this type of muscular dystrophy, I think that it’s very, very important that you keep your subscribers informed, and most important, the parents of the kids that have Emery-Dreifuss.
I love your publication but would love more information.
— Eric Markell, Huntington Station, N.Y.
Editor’s note: MDA and Quest strive to find and share relevant updates for all of the neuromuscular diseases in MDA’s program. While we cannot cover every disease in each issue of this quarterly magazine, keep in mind that research advances for one specific disease can and often do have a positive spillover effect for other related diseases. Also, for more timely updates between issues of Quest, consult MDA’s online database for specific information by disease.
Quest Subscription Changes?
If you have questions about your Quest subscription and are registered with MDA, contact your local MDA office by calling (800) 572-1717. Personal records are maintained at your local MDA office, so it’s important that you notify the Health Care Service Coordinator in your area with any changes.
Also visit mda.org/locate to find your local office. If you’re not registered with MDA, direct subscription questions to the national office at (520) 529-2000, ext. 6430.