MDA/ALS Newsmagazine Blogs
MDA/ALS Blogs cover life with ALS from the perspective of those who know it intimately: people with ALS, their family and friends, researchers, advocates, therapists, policymakers and others. Find out how you too can share your thoughts and advice with others in the ALS community.
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Editor’s note: In a conversation with Bruce Kramer on May 22, he emphasized that this blog is “not a critique of Susan Spencer-Wendel or Dudley Clendenin, but a critique of how society looks at disability and at ALS in particular.” Bruce Kramer, Ph.D. Sometimes, the choices presented...Posted on Thursday, May 23, 2013 - 05:00,
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Clive N. Svendsen, Ph.D. Geneviève Gowing, Ph.D. What hope are we seeing for stem cells in ALS? Stem cells have two very important characteristics: They can reproduce themselves over time (self–renew), and they have the ability to replace lost or damaged cells in the body. So...Posted on Wednesday, May 22, 2013 - 09:25,
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MDA Vice President of Research Jane Larkindale Speaking as a scientist with an interest in drug discovery, ALS is hard. Well, that’s probably pretty obvious, as if it were easy, we’d have a cure by now. When I first came into the field and whenever I thought about ALS, I felt stupid...Posted on Wednesday, May 15, 2013 - 05:00,
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Jeff Lester You probably think I am about to write another awareness plea, but you would be wrong. Awareness is terrific, but isn’t it time to start turning from awareness and start expecting or, even better, demanding a much better A-word? ACTION!!! For people who have ALS, and those who...Posted on Monday, May 13, 2013 - 05:00,
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Heather Durham, Ph.D. The pace of discovery in ALS research has increased exponentially, through expanding the scientific community and taking advantage of new technologies and methodologies. Examples are the new genes linked to ALS that have been identified over the last few years, and...Posted on Wednesday, May 8, 2013 - 05:00,
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Tara Turner Creating ALS awareness is one of the greatest gifts you can give to a loved one living with ALS. It speaks volumes when you can’t find the right words, and it unites you together with an unbreakable bond. If you struggle with how you can get involved with raising awareness,...Posted on Monday, May 6, 2013 - 04:17,
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“I need a wheelchair, and I can’t get one through my insurance. Can you help me?” Thom Gressman I’m sure a lot of us have heard that statement throughout the years. In many cases, the answer unfortunately has to be, “I’m sorry, there’s nothing I can do.” Well — not so fast. Actually,...Posted on Wednesday, May 1, 2013 - 15:09,
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Christina Medvescek An MDA colleague recently emailed me an article about physics legend Stephen Hawking, who visited the labs of ALS researchers Robert Baloh and Clive Svendsen on April 9. Stephen Hawking — certified genius, author of “A Brief History of Time” and holder of countless...Posted on Wednesday, April 24, 2013 - 05:00,
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Bonnie Guzelf I belonged to a book club for many years. When it became too difficult for me to get around in my wheelchair and in and out of other people’s homes, I decided to drop out of the club. I still keep in touch with some of the members. I had an interesting encounter last week...Posted on Wednesday, April 17, 2013 - 04:31,
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Jodi O’Donnell Ames I have always believed in angels, especially the heavenly ones. But angels come in all shapes and sizes, and can fly into our lives right here on EARTH, just when we need them most. I have been blessed by many angels in my lifetime, but have to share one moment that...Posted on Tuesday, April 9, 2013 - 09:45,
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Tara Turner I woke up Monday morning with an anxious heart. It was early, Craig was out of town, and I knew that the day was going to be filled with a lot of emotions. As I prepared myself to stand beside my family and support each member in their own unique way, I prayed for strength and...Posted on Monday, April 1, 2013 - 12:25,
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Doug Schneebeck and family In 2005, I was 45 years old and married 15 years to the love of my life, Jean Bannon. Jean has a daughter, Jessa Herren, then 25, and our two kids, Jimmy and Abby, were 10 and 8 years old at the time. Jean and I are both lawyers and had jobs we enjoyed. We skied...Posted on Monday, March 25, 2013 - 05:00,
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David Jayne Though I do not remember the date, I recall the neurologist’s words verbatim when all of the tests concluded and he gave me an ALS diagnosis. That was 25 years ago this spring. I drove home from the appointment totally devastated, feeling my life was over. During the next...Posted on Monday, March 18, 2013 - 03:15,
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Chrystie Lose, aka Twysted Sam After seeing the movie “The Bucket List” with Morgan Freeman and Jack Nicholson years ago, I remember talking about it and even making a mental list of my own bucket items, but at the time I never actually wrote anything down. Truly, it just didn't seem...Posted on Wednesday, March 13, 2013 - 11:27,
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Jeff Lester I chose this topic as my introduction to you as a regular MDA blogger because it pretty much summarizes my nearly 20-year journey with ALS. When I was diagnosed Oct. 1, 1993, just before my 27th birthday, there is no way I could have dreamt that I would be here now giving sage...Posted on Tuesday, March 5, 2013 - 09:34,
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Tara Turner Amidst the shock and horror of discovering that our family was trapped in a web of labels and uncertainties, one thought continued to race through my mind — “her voice” … As the thought pulsed through me, I reached for every crevice, every dark hidden corner to find it. I was...Posted on Monday, February 25, 2013 - 09:19,
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Bonnie Guzelf I went to the mall today. Not an unusual event for most people, but I am a person with a disability, and I use a wheelchair, I live in Phoenix and it was 113 degrees, so going to the mall is an event. I needed to get a formal dress for a cruise that my husband and I are...Posted on Wednesday, February 20, 2013 - 11:31,
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Jodi O’Donnell Ames If you have ALS, so does your family. That is to say, ALS is a devastating disease which affects everyone involved. While living with ALS is difficult, living with ALS without the support of family and friends would be even more challenging. When my late husband Kevin...Posted on Monday, February 11, 2013 - 09:19,
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Christina Medvescek 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...Posted on Sunday, February 3, 2013 - 10:30,
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Tara Turner It was an average day at work. I had spent the morning laughing with co-workers trying to stay motivated enough to make it through the last half of the day when I noticed my phone was vibrating. I looked down, and in a split second I panicked. As I answered the phone, I could...Posted on Friday, February 1, 2013 - 14:12,
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Bonnie Guzelf In 1999, I was diagnosed with ALS. I was told at the time that there is no cure and no treatment. Gee!!! My first reaction was to sit in a corner and cry. I did that for a while and soon realized that it didn't change my situation and people really didn't want to be around me...Posted on Friday, February 1, 2013 - 14:10,
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David Jayne ALS being dealt with as an “inconvenience” sounds like a cavalier statement from the inexperienced, at best. I recoil from typing such crass words — but I also have a celebratory feeling about this opportunity to share a discovery that, to me, has been more important than a...Posted on Friday, February 1, 2013 - 14:08,
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