Wednesday, September 24, 2014

My Take on the ALS Ice Bucket Challenge and My Message to the Haters

I deliberately waited for the momentum to slow down a little and for the "naysayers" to rear their ugly heads, as I was sure they would-- and they DID!!  Because no matter what good deed is done, some group -- or groups -- must come out of the woodwork to criticize and almost make the do-gooders question that they did good, and almost make them feel that they did something bad. 

You had to be living under the proverbial rock this summer -- at least in the United States -- to not be familiar with the ALS Ice Bucket Challenge.  But if you are reading this and are not on Facebook and/or don't have a TV, and are not in the United States, here is what it was about [in a nutshell]…..In order to raise money for ALS, you filmed yourself dumping an ice bucket full of icy cold water over your head, either of your own altruistic good will or as a response to a challenge [nomination] by someone who had already done the challenge.  Most of the people who did the challenge also then donated money to the ALS Association, the ALS Division of MDA[Muscular Dystrophy Association], of which ALS is one of the 40+ muscle diseases covered, or MDA's Wings Over Wall Street, Project ALS or ALSTDI [Therapy Development Institute].  Then you nominate 3 people [or groups] to follow in your example and do the Ice Bucket Challenge and nominate 3 others….and so on.  I am not going to go into the history or how this whole thing started;  you can "google it".  Just go on YouTube and search for "ALS Ice Bucket Challenge" and you will see hundreds of videos of everyday people getting icy water dumped on their heads.  Curiously, there are no videos on YouTube of the many celebrities who did the challenge, but there were hundreds -- TV stars like Mariska Hargitay and Chris Meloni from "Law and Order SVU" and the cast of "Modern Family" to superstars like Angelina Jolie and Brad Pitt, Reese Witherspoon, and even media moguls like Oprah and Ellen DeGeneres.  And these stars gave huge amounts of money in donations.

In the 75 years since Lou Gehrig's famous "Luckiest Man" speech [who hasn't seen Gary Cooper in "Pride of the Yankees"?] at Yankee Stadium, there hasn't been such awareness of the disease that now bears his name in the United States.  In the 10.5 years since I have been diagnosed, I have not heard ALS on the lips of so many celebrities!  Do they know what it's like to live with ALS?  Most of them don't as most of them didn't know about cancer or AIDS until it touched their lives or the lives of loved ones.  And as the years went on and the dollars flowed in, people were living longer with cancer and AIDS and people talked about those diseases -- decades after my grandmother died in 1948 of breast cancer at the age of 50 after being sick for a few weeks.

Since typically, ALS patients died within 2-5 years, it was considered a death sentence with no hope.  Upon diagnosis, most ALS patients were told to "get your affairs in order" and basically to go home to die.  And we weren't glamorous -- we were quickly put in wheelchairs and many of us lost our ability to speak, which is not sexy.  So I personally don't care if the over 60 mllion dollars raised is done so by celebrities who -- at this point -- don't know diddly-squat about my disease.  And I don't care if they view it as a fun way to get publicity at this juncture.  All I know is that many people I have met this summer have suddenly woken up and realized that I have the disease for which they are getting buckets of water thrown on their heads.  I am seeing people on Facebook dedicate their ice-bucket humiliations to me and that means a lot. This Ice Bucket Challenge has raised a shitload of awareness as well as funds.  At this point, I don't expect much more.  I know there are a bunch of people out there who are getting wet and freezing and saying "this is the disease my friend/coworker Fern Cohen has ……now I get it!!"

All was going too well, and then the party poopers had to weigh in.  First, people with other diseases, some with cancer, others with other neurological or muscle diseases, saying that they were sick and tired of the attention ALS was getting.  All my 10+ years with this disease, I never begrudged the cancer, AIDS, MS or Parkinson's patients the attention their diseases were getting.  I always understood cancer and MS were not as rare as ALS and in fact I had always volunteered for AIDS Walks, MS walks, Broadway Cares/Equity Fights AIDS, etc.  Those are terrible diseases too.  But for the first time in 75 years, can't we "enjoy" our day in the sun and the funding we so desperately need to find a cure or even an effective treatment?-- to date, we only have relief of symptoms and ONE FDA-approved drug which only prolongs our lives maybe a few weeks.  Most cancers --especially when caught early, can be cured or put into remission these days, AIDS is no longer a death sentence, and MS has so many different drugs coming out all the time.  Cut us a break, will you?  Just this once.  Now when Rite-Aide and CVS run their promotions every year and the cashier asks "Would you like to give $1 to ALS,  less people will respond with "wha?" and maybe remember the Ice Bucket Challenges and say "ALS?  sure, here's a dollar".  Maybe I can get more donations for my team "Fern's Fighters" in this year's "Walk to Defeat ALS".

Then came the concern about where the money is really going.  This is a concern when we donate to any charity; is the money going to pay CEOs' huge salaries and/or administrative expenses?  And, in this case, many wondered if the money was going to research or to patient services.  I suggested to these skeptics that it was hard to know this with the ALS Association and MDA [sorry] and it would be safer to donate their money to either Project ALS or ALSTDI   because these two entities ONLY do research and both have "dream teams" of scientists that ONLY do research and have very low overhead.  Furthermore, both of these organizations were started by family members of ALS patients and their websites are totally transparent; they tell you all about the research they are doing and where the Ice Bucket Challenge money is going.  I have seen full-length documentaries about both Project ALS and ALSTDI and I am totally confident that the money you donate will go straight to research.

Then came the water people.  Okay, I understand there are poor people who don't have clean water in the world, especially Asia and Africa.  I have given to that cause and a cereal I buy often: Purely Elizabeth gives a percentage of what I pay, to the Water Project.  These water people said they refused to do the Ice Bucket Challenge because  it wastes water.  Okay, okay.. I hear you.  We water our lawns and keep the water running while we brush our teeth too.  Okay, maybe next time we can tweak the challenge to use recycled bath water or rain water, or come up with a way that we don't waste so much water.  this was all new to us. If you're concerned about wasting water, then just make a donation, and SHUT UP.

Then the Catholic Church weighed in and said that Catholics should find out if their money was going to usage of fetal stem cells.  So next time we can promote organizations that only use ADULT stem cells.  I hear you.  And the animal activists exposed that a lot of the research uses mice.  I don't know how to answer that as I am an animal lover too. I am understandably happy they are not using bunnies for ALS research and refuse to buy cosmetics tested on animals and eat a vegan diet mostly [I fall off the wagon sometimes].  To date, the "mouse model" hasn't really yielded any dramatic results, so research scientists are looking at other "models",  like more human trials.

But the naysayer who really pissed me off was a partner of an ALS patient who passed away sadly about 6 years ago.  I like this woman a lot and she did something really special for me after her partner died for which I will be eternally grateful.  But this woman posted on Facebook that she was against the Ice Bucket Challenge, because celebs were using it as a "publicity stunt" and knew nothing about ALS.  She thinks that these celebs should be going around and talking about ALS.  Yes, that would be ideal, but WHO CARES at this point?  Typically, we don't feel passionate about a disease until it touches us personally.  Nobody cared about breast cancer when my mom went on her first journey with the disease in 1976.  It was whispered -- as if the mere utterance of the words would spread the disease through the air -- and women were embarrassed to talk about it [in the mid-1970s, breasts were very private]  It often involved breast removal, which was the elephant in the room and people stayed away from my mom as if she had the Plague or leprosy.  Now, we wear our pink ribbons with pride and women [and men] talk about breast cancer freely,  even celebrities.  The same with AIDS -- it took a while before anybody said in public that he was HIV positive.  Kids like Ryan White were banned from going to school.  It took a while for anyone to get up and talk freely about AIDS.  What did anyone know about Parkinson's Disease before Michael J. Fox came out as the disease's famous face? And then I wonder: would this woman whose partner is dead half a dozen years -- would she begrudge the money raised by the Ice Bucket Challenge if her love were still living with ALS?  

What do we expect?  The money and awareness raised by the Ice Bucket Challenge have been phenomenal.  It even caught on in the Cayman Islands, the United Kingdom and Canada.  We are talking about the Ice Bucket Challenge next summer.  Perhaps the effort can be tweaked in future to use recycled water, have the funds go to stem cell treatments that only use adult stem cells, only to research that doesn't use animals, and only earmarked for research altogether [and make sure no ice bucket money goes to any other fund, like administrative or patient services].  And maybe next summer, we can produce a series of PSAs with celebrities getting icy water thrown on their heads and saying something like "ALS is a degenerative and disabling disease which strikes adults of both genders, all ages, races, religions, nationalities and ethnicities, in the prime of their lives.  For more information, go to  [website]".  For now, I am so grateful to the many celebrities and non-celebrities who raised colossal funds this summer. Nothing is perfect,  especially the first time.  And, it's important to note that the ALS Ice Bucket Challenge was started by someone to promote another cause, and then gained momentum for ALS by an ALS patient.  It wasn't begun by professional fundraisers or PR people, who would have perhaps researched the ins and outs and anticipated the objections.  However, this grassroots campaign didn't see what was coming.  As a matter of fact, nobody saw that this campaign would go so viral and bring in the many millions it raised.  It was the most awesome surprise of my summer.