The Muscular Dystrophy Association (MDA) offers a variety of free resources about neuromuscular disease. The MDA makes these available to those registered with the MDA, family members, and anyone else with an interest in neuromuscular disease. Updated regularly, these resources cover a wide variety of topics related to neuromuscular disease. Many MDA publications are available in Spanish as well.
There are several resources available about the MDA and MDA Research. Titles include: MDA Fact Sheet; MDA Services for the Individual, Family and Community; MDA Task Force on Public Awareness; MDA Task Force on Public Awareness; and Recent Research Developments. The current Annual Report is also available. Others titles highlight MDA programs, such as MDA Summer Camp, and MDA Art Collection.
The MDA publishes a number of publications that families with children will find particularly useful. Teachers who work with children with neuromuscular disease may also benefit from these guides, which include: Learning to Live With a Neuromuscular Disease: A Message for Parents; Everybody's Different, Nobody's Perfect - Bilingual Edition; and Everybody's Different, Nobody's Perfect - Bilingual Edition. Parents and educators who are helping a young adult prepare for independent living will find Roadmap to Independent Living to be useful.
Those who provide caregiving to someone of any age with neuromuscular diseases may be interested in titles such as 101 Hints to Help with Ease and MDA ALS Caregiving Guide. Several booklets discuss important information for those with neuromuscular diseases. Titles include Respiratory Care in Neuromuscular Disorders, and Preparing for Emergencies.
The MDA publishes Quest Magazine quarterly, and contains a variety of articles about all aspects of neuromuscular disease. Print copies of this magazine is available free to those registered with the MDA. Back issues are available for a fee. Articles are also available online and anyone can subscribe to Quest Online for free. The MDA also publishes the MDA/ALS Newsmagazine available online. The MDA also provides a detailed “Facts About” booklet about each of the 40-plus diseases served by the MDA. Unfortunately, copies of these booklets can no longer be ordered, but can be downloaded as a .pdf file and printed for free.
Many of the MDA print resources can be ordered for free (single copies) and are also available online. There is a charge for print copies of a few items, such as the MDA ALS Caregiving Guide. The link for ordering publications from the MDA can be found below this article. Alternately, you can call your local MDA office to order small quantities. The above lists just a sample of available publications, so if you don’t see what you are looking for, check the website for additional titles.
When I was first diagnosed with a neuromuscular disease, I wanted learn everything I could about neuromuscular disease and my specific diagnosis. With help from the MDA and its free print resources, I quickly learned what I needed to know.
MDA website, (n.d.). http://www.mda.org/ . Retrieved 12/1/10.