The Muscular Dystrophy Association (MDA) has produced a series of free educational presentations called the Public Webinar Series. Initially presented live, these video presentations have been archived and made available upon demand. Led by experts and people who are affected by neuromuscular disease, the topics covered by the Webinar Series include a wide variety of important issues.
Currently, at least twenty-two MDA webinars have been made available on-demand to the public on the MDA website. The newest webinars include one called Straightening the Growing Spine and another called myMuscle Team – Learn How to Set Up a Personal Care Community. Recently two webinars about career and workplace issues have also been added.
Other topics of relevance to the entire neuromuscular disease community include: genetic counseling; research advances in CMT; fighting the flu; disability rights for individuals with neuromuscular disease; attending college with neuromuscular disease; living independently with neuromuscular disease; travel with disability; and dating and disability. The site also offers webinars on educational advocacy, with separate webinars for educational professionals and families. Some of the archived webinars also have associated .pdf files with follow up answers to questions made available.
There are also several webinars specific to specific neuromuscular diseases. One of the webinars highlights research and treatment advances in Charcot Marie Tooth (CMT). There are several webinars related to amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease). These include webinars about medical management, nutrition, advocacy, an update on research, and two webinars about the National ALS Registry (one for families, one for physicians). The ALS Starter Kit is also available in both webinar and .pdf formats.
An additional webinar has been made available by the MDA Transitions program giving updates about the program. This program is available in the Transitions Center. See resources for the web address. The site indicates that additional webinars will be made available in the future.
Upcoming webinars have been planned by the MDA. Announced topics include research updates, and information for parents, including guidance following diagnosis of a child with neuromuscular disease and educational planning for a child with neuromuscular disease.
Advance notice for webinars will be sent to anyone registered with the MDA with an e-mail address on file with the MDA. Notices will also be posted by MDA on Twitter and facebook before live webinars. Attendance to a live presentation is free, but does require pre-registration. Participants in live webinars will have the opportunity to submit questions in advance via email.
The MDA Public Webinar Series can be tricky to find on the MDA website, and the listings have changed location with the recent website changes. To find the most complete list of webinars, starting at the homepage, click on the “Help Through Services” tab. Scroll to the bottom of the page, and click on the “More Resources” button. Next, click on the “Webinars” button. Alternatively, use the web address given below under Resources. [The listing under the “Advocacy” button (with only fourteen of the nineteen available webinars listed) is not as complete as the listing under the “Help Through Services” tab (with twenty-two listed)].
The MDA Webinars can also be accessed at the youtube website. Just type in “MDA Webinars” into the search box. Note that there are a few non-related videos that may also show up with your search.
The MDA also offers many free publications about neuromuscular disease which can be found on their website (see Resources for web address). The free webinar series provides another educational tool for learning about important issues that affect the neuromuscular community. Make time to attend a high quality educational presentation from the comfort and convenience of your own home.
Muscular Dystrophy Association website, (n.d.). Advocacy Resources: Webinars. http://www.mda.org/services/more-resources/webinars . Retrieved 2/1/13.
Muscular Dystrophy Association website, (n.d.). Publications. http://www.mda.org/publications . Retrieved 2/1/13.
MDA e-update, (July, 2010). MDA Public Webinar Series offers a new way to learn. http://static.mda.org/eupdate/10july.html#webinar . Retrieved 2/1/13.
Transitions Center, (2012). Webinars. http://transitions.mda.org/webinars . Retrieved 2/1/13.
youtube website. MDA Webinars search. http://www.youtube.com/results?search_query=MDA+Webinars&page=1 . Retrieved 2/1/13.
Shamrock images courtesy of the MDA. Used with permission. You can download a Shamrock at https://secure.mdausa.org/myspace/shamrock/ShamrockImages.aspx