<p>Drop in the bucket? Yes, maybe in terms of overall research dollars needed. BUT, there is so much more that all this money can do. There are so many adaptive devices available that families with a person suffering from ALS may not be able to afford. There are special computers which people who have one form of ALS, the bulbar variety which starts in the person’s face, can use to communicate. That type of computer “speaks” for the person. There are special wheelchairs to be purchased. There are fabulous computers with “eye blink” technology-people in the latter stages of ALS are completely paralyzed other than their eye muscles, and they can use these special computers to communicate when they literally cannot move another muscle. These millions of dollars which are being raised can give the ALS Association the opportunity to make more of this technology available to so many more people. </p>
<p>Nothing about the Ice Bucket Challenge is particularly analogous to the Macarena for me. I realize that I am particularly passionate about this. Watching your mother, the most vibrant, athletic, wonderful person waste away and die from this disease, makes me appreciate Facebook and those who have chosen to donate when most of them hadn’t known anything about ALS before July 29th. </p>
<p>sorry, I was not trivializing ALS in my Macarena analogy-- I was just saying the angst surrounding the Ice Bucket Challenge, the references to lemmings and groupthink, seem misplaced and overwrought. The ice challenge seems to me to be a fun way to drive money to a good cause.</p>
<p>I got into work today and the young man who I named in my video clip who lost his mom to ALS gave me a big bear hug and told me what a wonderful thing it was and that he was really touched. (our whole work team is doing it today - our supervisor and I did it yesterday and challenged them in solidarity with this young man). So however people feel about it in terms of the copy cat thing it is a tangible way to show support for people who we know, acknowledge what their family has been through, and give $$$ to a good cause.</p>
<p>I am very happy that this brutal disease is getting some publicity and funding. I have already donated. </p>
<p>I do have to say that, although I am all in favor of this challenge, I hope that no one names me. I’m sure it’s leftover childhood/teenage neurosis, but I am very uncomfortable being the center of attention. When I was married, I had a low-key wedding without the bride dress/veil and walk down the aisle (no aisle, outdoors), because I could not tolerate the prospect of being the center of attention. </p>
<p>I don’t have a problem speaking in front of hundreds or a thousand about my work, though.</p>
<p>I think it’s great to bring more awareness to ALS and raise money for ALS. Has there been any progress in treating this disease? I understand there is no cure. AIDs used to be a death sentence in the 80s, and is now very treatable and sometimes nearly cureable . Many types of cancers that used to have a 10% survival rate now have a 90% survival rate. I think it is great to devote some more resources to ALS. And if it gives people a chance to make videos of themselves doing stupid stuff that is fine with me. I am still expecting to see (or at least hear about) someone having a heart attack after dousing themselves with ice water.</p>
<p>I plan to make a video of myself dipping into a bubble bath (90 degrees). Don’t want to risk the shock of ice water. </p>
<p>Out of curiosity, I checked Wikipedia and found this:</p>
<p>“William MacAskill suggested that the challenge encouraged moral licensing, meaning that some people might use taking part in the challenge as a substitute for other charitable acts. He also proposed that by attracting donations for ALS, the challenge was “cannibalizing” potential donations that otherwise would have gone to other charities instead.[29]”</p>
<p>Oh, good grief. Get a grip. Every charitable donation to Worthy Cause X “cannibalizes” potential charitable donations to Other Worthy Cause Y. This is the kind of wound-up, overwrought talk about this challenge that makes my eyes roll out of my head! </p>
<p>@NJRes-Notwithstanding the article that emeraldkity4 just linked to, there really has been very little, if any, real progress made. I say this having a son who has worked for 3 summers in one of the foremost ALS clinical trial labs in the world, and who will start working there full time as a clinical research coordinator in a couple of weeks.
He has been a named author on a major ALS paper and mostly has told me about trials which have been stopped because they showed no promise. </p>
<p>A number of the studies now seem to be working with the relative minority of families who have the horrendous “luck” to have the familial version of ALS. I believe this only amounts to about 10% of the total cases. The Harvard Gazette article, which I was previously aware of, speaks in terms of hope and possibilities, nothing really concrete. They just haven’t seemed to figure this out at all yet.</p>
<p>With all the chatter about it I have discovered that way more people I know have been impacted by ALS than I would have imagined. It seems like everyone actually knows someone or several people who have it or succumbed to it. I know that I didn’t realize that and am glad to have had my “awareness” raised. With the people I know it has also been a welcome forum to talk about it. ALS is tough to talk about I think because of the known outcome. There is no sunshiny “holding out hope” message or treatment battle that draws people in. I hate to say that . . . it sounds really bad . . . I do think that some hope of remission or successful treatment of many cancers helps the unafflicted to feel more comfortable offering moral support. With ALS people just don’t talk about it.</p>
<p>@saintfan-you are right on target with your post #152. There is just no hope and our family just never discussed the known outcome. It just gets worse and worse for those afflicted.</p>
<p>This is a terrible terrible disease. I’ve had a family member suffer until she died in her mid-forties from this disease. I’m all for the challenge, since more people are becoming aware of ALS!</p>
<p>Have to agree with PG–all charities are competing with one another all the time for the public’s $$$ and attention.</p>
<p>I read about another group that criticized the challenge recently–this group opposed the challenge because the ALSA supports embryonic stem cell research.</p>
<p>My contribution was “new money” in that I wasn’t planning to give it to some other group. I did not rob Peter to pay Paul and I imagine that none of these younger set giving their $10-$25 did either.</p>
<p>I am not going to get political so I’ll leave it at this: animal testing involves the suffering of non-human animals for the possible betterment of humans; stem cell research involves cells that have no feelings and has the potential to end or relieve the suffering of millions. There is absolutely no comparison between testing on living beings and testing on cells. </p>