Sunday, September 14, 2014

ALS Ice Bucket Challenge Revised

I was nominated for the ALS Ice Bucket Challenge a few weeks ago. I didn’t dump ice on my head and I have no plans of doing so. I did take a dip in the utterly freezing Atlantic Ocean off the coast of Gloucester, which was quite a shock to this Florida girl who grew up near warmer water.

I’ve honestly had mixed feelings toward the ALS Ice Bucket Challenge. Initially it felt shallow and unhelpful, with too much body flaunting and not enough addressing the issue. I’ve only recently come to fully appreciate how much this viral phenomenon has contributed to ALS fundraising and increased awareness. 

Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease,” is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, causing those affected to slowly lose functionality. Voluntary muscle actions are affected first, and during later stages of the disease, many are unable to breath or eat without aid of expensive machinery. There is no cure.

I’ve been familiar with this disease since I met my best friend’s mom about 3 years after she was diagnosed with ALS. It was devastating to watch how quickly and completely Diane's functionality deteriorated until she passed away after a 5-year battle at the beginning of her daughter’s and my junior year of high school.

Diane rehearsing back when her only care was singing the right words. 
Over $109 million has been donated in the name of the challenge and more people than ever before are talking about ALS, a cause that is near and dear to my heart. I still don’t see the need to dump ice water on my head, but I’ve opted to do something that has a bit more meaning in addition to donating to the cause. You can easily make a donation at the ALS Association’s website.  

I decided to take a more personal route. Whenever we can both find the time, my friend Amanda is going to help me come up with a recipe that her mom would have loved. 

Amanda and me after her senior showcase — following mom's footsteps and then some!
Next time I make it to New York or Amanda comes to visit Boston, we’ll have a feast to honor and remember Diane, a wonderful woman, singer, and mom, who passed away from ALS nine years ago today.

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