In the
past, my major beef has been with the “Pinkification” efforts for breast cancer
awareness that take place every October.
I’ve
always felt that it is really dangerous when any one condition dominates the
consciousness of the American public.
To be
honest, I’ve been really grateful that given what has been going on in my
personal life, people have been considerate enough and no one has nominated me
to do the ALS Ice Bucket Challenge, because I won’t do it, at least not right
now.
At first,
I thought that the purpose of the Ice Bucket Challenge was to numb people in a
way that mimics some of the symptoms of ALS.
But that doesn’t seem to be the case.
I actually
would understand it a little bit better if that was the goal of the
challenge. But it’s not. The goal is to raise money and raise
awareness.
On the
money side, the Ice Bucket Challenge has prevailed.
In the
awareness department, I’m not so sure.
Pouring a
bucket of ice water over your head makes you uncomfortable for a few minutes,
at most, but it doesn’t raise awareness about what it’s like to live with this devastating
disease.
While all measure of celebrities, and even the President of the United States, have videoed themselves taking part in the Ice Bucket Challenge, few of these videos provide any education whatsoever about what ALS is and how it impacts the patients who are diagnosed with the disease, and their families.
While all measure of celebrities, and even the President of the United States, have videoed themselves taking part in the Ice Bucket Challenge, few of these videos provide any education whatsoever about what ALS is and how it impacts the patients who are diagnosed with the disease, and their families.
It isn’t awareness, if, when you ask probably 99% of the people who have done the Ice Bucket Challenge what ALS is, they probably can’t tell you much more than the fact that it’s a fatal disease, if they can tell you that much.
Doctors
are even warning against the challenge (http://www.forbes.com/sites/jvchamary/2014/08/25/ice-bucket-challenge/
and http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11294023).
And I know
that many people with RA involved in social media have questioned whether
taking part in the challenge could have an adverse affect on their health and their
joints.
As it
turns out, a recent e-mail in my inbox from the Arthritis Foundation was about Healing
Hands For Arthritis. On September 17,
2014, Massage Envy Spa will donate $10 from every massage and facial, and 10%
of sales of select skincare products to the Arthritis Foundation (http://www.massageenvy.com/healing-hands-for-arthritis.aspx).
I some
ways, I understand this a bit more than the Ice Bucket Challenge because many
people with arthritis benefit from massage therapy.
However,
if there is no educational component about arthritis provided along side the
donations on September 17, then this too fails to really raise awareness.
I guess we
have to ask ourselves what the goal of any advocacy and awareness campaign
is. Is it simply to raise funds, even
when there isn’t a clear direction to where all of those funds will go? Or is the goal to really raise awareness, not
just imprint the name of a disease on the public consciousness?
As of
yesterday, since July 29, 2014, $94.3 million have been raised for ALS. Last year, during the same period of time, only
$2.4 million was raised (http://www.alsa.org/news/media/press-releases/ice-bucket-challenge-082714.html).
So maybe
for those of us who are skeptical, the joke’s on us.
It’s great
to give to charity. But it’s not really
a sustainable effort if people are giving blindly, and/or due to peer
pressure.
ALS is a
horrible disease, and research efforts into finding a cure for this disease are
extremely important and necessary. But
there’s also the fact that we need to share the wealth.
I don’t
mean that to sound selfish. But there
are many diseases out there, including Lupus and RA, that are really misunderstood
by the general public, and even so by some doctors and some patients.
So it’s great that ALS has finally had its 15 minutes (and $94.3 million worth) of fame.
So it’s great that ALS has finally had its 15 minutes (and $94.3 million worth) of fame.
But before
you dump a bucket of icy water over your head in the name of ALS, or any other
disease for that matter, maybe you should think about it, rather than just doing
it.
I hear what you say, and agree with you. My son has epilepsy and I have Ehlers Danlos Syndrome. All of ours, and your conditions need funding for research, too. The problem is, like you say, people really don't want to know about it. I think they like to post pictures of themselves on facebook, though.
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