One Dad’s View on the ALS Ice Bucket Challenge

Two things happened in the past week in my role as a Dad that at the time were seemingly unrelated.  As I reflected on each of them, they connected in my brain and led to some additional thinking, a bit of Google research and ultimately to this blog post.  Let me take you through my week, my thoughts and my research.

On Wednesday, I took Grady to Children’s Hospital for his 11th or 12th visit (I lost count) over the last 3.5 years.  In early 2011, Grady was diagnosed with a cancer known as Wilms tumor (nephroblastoma).  He is one of the lucky ones, as surgeons removed the cancer and it was fortunately still in Stage I.  His Mother and I opted against the standard post-surgical chemotherapy treatment and entered into a clinical trial.  This particular trial is building data and evidence to show that kids with Wilms diagnosed under the age of 2 could survive at high rates without the need for chemotherapy and its related side affects.  Grady’s follow-up visits include CT scans, X-rays, ultrasounds and blood work to ensure the cancer won’t return.   While the greatest risk of cancer reappearing was in the first 2 years, his appointments will continue until he is 8 years old.  The clinical trial is led by Children’s Oncology Group, an organization funded by the National Cancer Institute and devoted to pediatric cancer research.  Childhood cancer research saved Grady from chemotherapy.

Yesterday, I accepted a challenge from my daughter, Claire, for the ALS Ice Bucket Challenge.  I allowed her to pour a bucket of ice cold water over my head while Grady filmed the whole scene.  And wow, what a great way to raise both awareness and money for a deadly disease with an unknown cure.  If you’ve logged onto Facebook within the past two weeks, you have certainly seen the results of a viral trend.  Interestingly, the ALS Association didn’t actually create this as a marketing campaign.  It evolved over the internet organically, and somewhere along the way participants linked their donation to ALS where it took on a life of its own.

Allow me to share some of my research (and no, I’m not going to footnote everything with its source information.  This is a blog, not a term paper).

* By the time I post this, the ALS Association has received over $80 Million in donations within the last month.

* For comparison, the Susan G Komen for the Cure organization (the national group, not including local affiliates) brings in just over $300 Million a year.

* A little over 5,600 people are diagnosed with ALS each year in the US.

* 13,500 children from 0-14 years are diagnosed with cancer each year in the US, the leading cause of death by disease for children (#2 overall to accidents)

* The incidence of childhood cancer has increased about 29% over the last 20 years.

* The average number of years of life lost to cancer for those children who do not survive: 71

* 96% of federally funded cancer research is directed toward adult cancers.  Less than 1% of the American Cancer Society’s donations are directed toward childhood cancer research.

* Pharmaceutical companies hardly invest in childhood cancer drugs, likely because it’s not as profitable.  The FDA has only approved 2 new treatments for childhood cancer in the last 20 years that were originally studied in children.

I want to make the point clear that this blog is not intended to downplay ALS and the windfall of dollars that will go to researching a cure.  I have friends who have lost family members to the disease; it’s horrible.  I chose to write about this because I know people have a limited amount of money they give to charities in the course of a year.  You have a choice on where that money goes and the impact those dollars have in our world and for benefiting our society.  So before you jump on the latest internet charity trend, or text your money to the number on the TV during the next star-studded celebrity concert, give it some extra thought.  How much money do I set aside to give each year?  What organizations align with my giving goals?  Where can I make the biggest difference?  Who gets my money?

I chose not to post my ALS ice bucket video to Facebook.  And while I applaud the efforts and giving from many of my friends, I’m re-writing the ice bucket video script to something more personal.  I’m choosing to give my money to fund additional research into childhood cancer.

2 thoughts on “One Dad’s View on the ALS Ice Bucket Challenge

  1. It is the 21st century equivalent of a chain letter, the only difference is “breaking the chain” in this case is viewed as tacit endorsement of a horrible disease. It’s shameful. Well I’m one who broke the chain. I won’t be bullied.

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