ALS Awareness Month

I won’t ask you to pour a bucket of ice over your head. Have at it, if you are interested. It is, after all, ALS Awareness Month.

In honor of this official month, I’m posting this blog I wrote in honor of the beautiful heart and soul that was Tami Kidd.

Tami was a kick ass, fun loving, loyal, dependable, thoughtful, silly, profound friend who I never knew as well or as long as I would have liked.

Here’s a post a wrote in March during my altMBA program:

I wheeled her into the shower while she joked to make me feel comfortable. I had never bathed a grown woman before. She needed me to. We both felt slightly ashamed, but it was part of her life by then. At least I wasn’t a stranger. We were having a girls weekend at her home in Atlanta, and she was gone from our planet 10 days later. It was not a surprise, yet was still dreadfully painful.

ALS, also known as Lou Gehrig’s Disease, cruelly tore the life from my
friend Tami Kidd and separated her from her family, two beautiful children, and her many friends and supporters. Up until the very end, the horrid disease never captured her heart or her spirit. She transcended the levels of kindness and generosity i had previously known.

Just before my wedding and about 3 months before she passed, Tami texted me with:

“Hey girl. Just a quick thinking about you email! sending the positive sane vibes to ya! Keep me updated. Did the mom like the dress any better in person????? lol. Lumi”

Lumi = love you, mean it. It was her thing, her sign off, her sweetness. She was getting a kick out of my future mother-in-law’s dislike of my simple wedding dress. Oh, I could go on about Tami! Instead, read my homage, A Kidd I Used to Know, and even click through to her blog. (She would have loved that I am doing the altMBA; probably would have signed up right along with me.)

The Disease

The thing about ALS is that it’s always fatal. But wait? What about Steven Hawking? He likely has a rare strain of the disease. For most people, the progressive muscle weakness from the neurodegenerative disease leads to the loss of all voluntary movement bit by bit, then difficulty breathing, and ultimately, death. Essentially, your body stops functioning but your mind is completely alert and you are aware of every painstaking loss. On average, the process takes two to three years — prolonged agony, watching yourself deteriorate.

Tami has been gone almost 9 years. She’s never too far from my conscious mind. I get birthday alarms for her kids, and I get my regular letters from the ALS Association asking for my financial donation, which I send to the Georgia Chapter one or two times per year.

The Cause

Aside from Hawking fans, most people had not likely heard about ALS Disease until the brilliant Ice Bucket Challenge of the summer of 2014. As The NY Times reported, the campaign “lit social media on fire.”

If you were living in some countries outside the US (or in a cave inside in the US), the ice bucket challenge become a social media movement like we’ve never seen before. It started as a general cause, but an ALS sufferer and activist made it his own, tied it to the ALS movement and it skyrocketed.

More than one million people made a video of themselves challenging other friends and then getting a bucket of ice water dumped over their heads. They shared it via social media and (hopefully) donated $100 to the cause.

The ALS Association reported raising nearly $115 million, a 3,504% increase over donations during the same period the previous year, according to RJ Metrics, a business intelligence software company. Actors, pop stars, performers of all types, CEOs, moguls and more completed the challenge. Even President Obama talked about, although he did not do it.

The Rub

Unfortunately, as Seth Godin noted in a 2014 blog post: “more than 90% of the people mentioning it (posting themselves being doused or passing on the word) didn’t make a donation to support actual research on an actual disease.”

RJ Metrics reported “a whopping 26% of participants didn’t even mention ALS in their videos. And a paltry 20% of participants mentioned donating money.” (Descriptive adjectives their own.)

For a more positive frame from RJ Metrics: “Participants who mentioned ALS were 5x more likely to donate, doing so 25% of the time vs. just 5% for those who didn’t mention the cause.”

If you are looking for a worthwhile cause to support, please consider donating to ALS research.