If you are not a member of the MDA, I would strongly recommend that you join. They have several good services available and some knowledgeable resources. Below are some of the services that I use today.
QUEST MAGAZINE
Quest magazine is a good source of information on current research, resources and services. If you are not a member, you can access Quest magazine online by following this link (http://quest.mda.org/). The following link will take you to their archives (http://quest.mda.org/back-issues).
MDA CLINICS
Another good benefit for MDA members is the MDA clinic. Most areas of the country have a clinic within a hundred miles and if you are in or near a larger city there is most likely one that is local. Most neurologists that work at these clinics are aware of Kennedy’s Disease. And, most MDA staff members are familiar with Kennedy’s Disease and aware of your special needs.
If you have had a positive or negative experience at a MDA clinic, the MDA has a short (5 minute) anonymous online survey to help the organization improve their services. I highly recommend that your complete the survey even if you are totally happy with your clinic experiences. The link to the clinics page is http://mda.org/clinics/. On this page you can find a clinic near you, review clinical trials, review available services, and complete the survey (the gold box on the right “Tell us about your MDA Clinic”).
LOAN LOCKER
Another service that is quite useful at times is the MDA loan locker. People donate their slightly used mobility equipment and other handicap equipment/accessories to the MDA. They are refurbished and made available to members. For example, if you want to try out a manual or power wheelchair, or, if you are traveling and need a manual or power chair at the destination, the MDA might be able to accommodate you. There is far more than just wheelchairs at these lockers. Each regional loan locker is different as to equipment that is available. Check with your local or regional office to find out more.
FIND AN OFFICE NEAR YOU
Go to http://mda.org/ and put your zip code into the box near the top that says, “Find your local MDA office.”
LET OTHERS KNOW
Also, let me know in the comments section below of your experiences with the MDA. Your thoughts and opinions might be helpful for others especially if they have never used any of these services.
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