I recently spent some very interesting, inspiring, educational and occasionally disturbing time cruising the Internet trying to piece together a definition of what a blog actually is. The best I can describe: A blog is a regular (though often irregular) sharing of information — personal and factual — around a general theme, and includes a feature that empowers people to comment on what they’ve read.
The MDA/ALS Blog is a blog “aggregator” — an MDA-selected collection of blogs by and about people with ALS and those who love and support them. When you come to this space, expect to find perspectives, resources, advice and comfort regarding all aspects of life with ALS from people who live with ALS in some fashion each day.
Besides writers with ALS and their family, friends and caregivers, you’ll hear from ALS health care team members, researchers, policy geeks, social media gurus, technology fans, do-it-yourselfers and others. Some regular voices will be heard, along with some solitary shouts from the wilderness.
Our beginning lineup includes a blog by the adult daughter of a woman with ALS that captures a scary moment in her journey with her mother, and blogs from two longtime ALS survivors who write, respectively, about the wonders of massage and the dark complexities of relationships with ALS. Also included is info about a national company that guides customers (for free) to local recycled and low-cost assistive equipment, like stair lifts, wheelchairs, door openers, etc.
How to find, submit to the blog
Check the MDA/ALS Blog space each week for new columns, or sign up to be notified whenever a new blog is posted.
Send submissions to firstname.lastname@example.org, and put “ALSN Blogs” in the subject line. If you currently have a blog in which ALS is part of your theme, we’d love to have a link to it.
In my 12 years with MDA, I've learned that:
- courage, creativity, strength, pragmatism, spirituality, insight and humor are hallmarks of the ALS community; and
- this disease is easier when shared.
Please join the conversation.
About the Author
Christina Medvescek, vice president of publications for the Muscular Dystrophy Association, is a longtime journalist, mediator, wife, mother, caregiver to an adult child with cerebral palsy, and frequently amazed observer of the ways of life. Managing editor of MDA's Quest magazine and the MDA/ALS Newsmagazine, she works at MDA's national headquarters in Tucson, Ariz. Send comments and suggestions — about blogs or any aspect of MDA's publications — to email@example.com.