Saturday, August 16, 2014

Chill Out: A Response to “Taking the Icy Plunge”

It’s not every day I have the opportunity to articulate a cogent argument against my brilliant former professor, so when it comes I just can’t pass it up.  Recently, in “Taking the Icy Plunge (or not)” Sean Philpott-Jones argued against the #ALSIceBucketChallenge.  For those of you unfamiliar with this challenge, it is a campaign to raise money for research and awareness of a devastating disease, Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s Disease).  The idea is: one person posts a video of him/herself having a bucket of ice water poured over their head, they then challenge three friends to pour a bucket of ice water over their heads and/or donate $100 to an ALS charity.  The challenge has gone viral and has likely filled your facebook newsfeed as it has mine.

ALS is a devastating disease that slowly immobilizes its victims striking their muscles in any order: arms, legs, voice, diaphragm, any muscle can be affected.  People afflicted with the disease lose control of their muscles and at its climax are entombed in their own body, unable to move or talk, a condition referred to as “locked in syndrome.”  ALS claimed my dad last October, so my family has a very personal connection with this horrible disease.

In “Taking the Icy Plunge” the author argues that the #ALSIceBucketChallenge has two major flaws:
1.       The challenge does little to raise ALS awareness long term with videos containing little substance.
2.       In a fundraising campaign charitable donation should not play second fiddle while public humiliation takes the first chair.

Ok, so to the first point, certainly the videos aren’t classy, but (this year at least) they seem to be effective.  At this time last year the Ice Bucket Challenge had raised approximately $32,000 for ALS charities, this year $5.5 million has been raised.  Clearly, something is going right for them in 2014.  They are raising awareness of this disease and hopefully sparking an interest in people to search and learn more.  Awareness and education are very different, while the videos are hardly educational, I think the buzz they are generating is positive and could have lasting effects.  Putting more substance into the videos isn’t a bad plan however, and I would encourage anyone accepting a challenge to talk a bit about ALS, why it is important to support charities that help victims of the disease, and post a link to a specific charity with you video.

To the second point, I ask you to look at our society.  We are a culture of sound bites, flashmobs, and thoughts not exceeding 120 characters.  Anything (within the realm of moral of course) that gets people involved and inspired to donate to a good cause is a worthy endeavor.  It is difficult to inspire people to lighten their wallets these days, even for a good cause.  Wise challenge participants have been asking for those challenged to play as well as donate and those not challenged to consider making a donation.
On a personal note, the Ice Bucket Challenge has been a fun diversion for my family this year, as I mentioned above we lost my dad to ALS in October.  For the last 3 years around this time I would call Dad and ask “when are you going to start the walk donation page?”  You see, during Dad’s illness an organization called ALS of Michigan really helped my family.  They have equipment closets filled with tools for ALS patients to borrow and return.  When you have ALS you need a lot of expensive equipment and depending on your disease progression you can go from one piece of equipment to another quite quickly.  For instance, ALS patients can go from cane, to walker, to scooter, to wheelchair within the span of a few months. 

ALS of Michigan lends these tools to pALS (people with ALS) and they exchange or return them as necessary.  The wonderful workers at ALS of Michigan even helped my mom find and figure out a portable shower chair in 2012.  This chair allowed my dad to travel to New York for my Masters program graduation.  You can’t really put a price on that can you?



Each year ALS of Michigan hosts an event called the “Walk & Roll.”  It is their biggest fundraiser of the year and The Joyful Jaywalkers (my dad’s name was Jay…cute huh?) begin fundraising as a team at the beginning of August for the walk on the last Sunday of September.  This year the early days of August ticked by and my fingers ached to dial up Dad and ask “when are you going to start the walk donation page?”  Sadly, he isn’t there to answer and though we are all committed to fundraising this year, no one was very motivated to step into Dad’s place and start up our 2014 team.  The 2013 walk was two weeks before my dad passed away.  It was the last place many of our friends and extended family saw him alive and it will be the last of our “firsts without dad” in this horrible year of adjustment.  Starting the fundraising, whether or not we admitted it to each other or ourselves, was a daunting and emotional task.  Denial was the way we all chose to handle these emotions, until about 2 weeks ago.

This was when our friend Vince was challenged to dump ice water on himself and dedicated his video to my father’s memory, and it went from there, friends challenging friends: everyone talking about my dad, how great he was, how much they miss him, and asking for donations to fight ALS.  It may sound silly, but watching friends and family take an ice shower in honor of Dad really warmed my heart.  It was also the perfect catalyst for our campaign, my siblings all accepted when my brother was challenged, and decided to dedicate our video to all of the wonderful people we lost this year to ALS and those still fighting.  When your family is personally impacted you meet and grow to love many others with the disease, so the list was long.  My sister set up our team fundraising page and we told everyone about the walk in our video.

The challenge is certainly silly, but what are we Americans if not silly right?  And is there anything wrong with being silly for a good cause?

My hope is that this challenge will inspire people to learn more about ALS and support great organizations that help patients and families.  ALS of Michigan is one of those organizations, if you are inspired please click the link below and support the Joyful Jaywalkers in 2014.


Tuesday, August 12, 2014

Big Bad Ebola

Please click the link below to read my latest article on bringing Ebola to the United States and the use of the experimental Ebola antiserum.  This article has been written for The Bioethics Program.

http://thebioethicsprogram.wordpress.com/2014/08/12/big-bad-ebola/