Friendship Parenting Relationships

One Face of the ALS Ice Bucket Challenge

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Katie and mom

I struggled with whether or not to even write this post. Once I decided, it became how do I want to express my thoughts…because I have a few about this topic!

My first thought– Facebook videos or posts that go viral or become trendy annoy me. I usually steer clear. 

Later thoughts were– Oh my God another ice bucket video?! (until you just accepted the fact that you’d see at least 25 pop up in your newsfeed per day). 

Followed by– is this really helping ALS? 

I know, I know. The ALS Association put the total of donations raised at $15.6 million from July 29-August 18. That is fabulous and amazing. There’s really no other way around that fact.

BUT! (There’s always a but!) Have you seen any videos where the person does the challenge, names some friends, and then posts something like, “I don’t even know what ALS is”? Because I have seen that and I shudder to think of what a person affected by ALS thinks when seeing or hearing that.

Yet, there is that cold, hard fact that the money is pouring in for a disease that is vastly underfunded.

So I’ll stop hating on the Ice Bucket Challenge and instead, put a face on ALS so you know just what (and who) is at stake for every dollar raised with this unorthodox fundraiser.

katie 2

Meet Tessa Dimin. Wife, mother, grandmother, friend.

Tessa was my dear friend Katie’s mom.

It often happens that you appreciate a person much more when she is taken from you. You only realize after she is gone just how amazing she truly was.

This was not the case with Tessa. Her light shone while she was on Earth, too. And I know I’m not the only one who saw that. You just knew Tessa was a special person when you spent five minutes with her.

Intelligent, funny, strong, warm, welcoming, and kind are some of the words that pop into my mind when I think of her. 

Tessa lost her battle with ALS a few years ago. A family lost its matriarch and the world got a little less bright.

For those that don’t know anything about ALS, here you go, courtesy of the ALS Association website:

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 the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

It is a horrific disease. Let’s hope that the money raised by the Ice Bucket Challenge will help the ALS Association fund research that discovers a cure.

Dimin family

So the next time you get annoyed by the billionth Ice Bucket video you see or you wonder why donating to this particular charity is important, please remember Tessa. She is the reason.

Thank you, Katie for allowing me to share your mother’s story and for providing these family snapshots. Click here to donate to the ALS Association.

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  • Elizabeth Cornwell
    August 19, 2014 at 4:39 PM

    What a beautiful family. Thank you, Katie and Lindsay for sharing this… — Just when the caterpillar thought the world was over, it became a butterfly…..

  • Elizabeth Cornwell
    August 19, 2014 at 4:39 PM

    What a beautiful family. Thank you, Katie and Lindsay for sharing this… — Just when the caterpillar thought the world was over, it became a butterfly…..

  • Nancy
    August 19, 2014 at 4:20 PM

    Having spent the afternoon with my client and friend Lori yesterday who was diagnosed a year ago this Sept. I felt compelled to ask her how she felt about The Ice Bucket Challenge. She was elated! She said not only is it bringing awareness to this horrific disease but it is providing so much more funding not only for research but for all of the people behind the scene whom have helped her so much. I therefore was nominated ironically yesterday and happily took the challenge this afternoon. I then DID what I’m hoping Everyone does “when they dry off” and donated!
    My heart breaks for Lori & her family so maybe I can help a little by putting a smile on her face watching me make an ass out myself -someone that she would gladly wish she could do!!

  • Melinda littlejohn
    January 4, 2015 at 2:11 PM

    Tessa. We were suite mates at Interlochen Arts Academy, went to Paris together to study with Gerard Koch, did a riotous 1960’s cross – country trip, stayed with the Sugarbakers and ended up in New Haven with John and Thelma. New Years Eve with Dirk in N.Y. & then on to Paris- where we were roommates on 5 Rue Berthollet. for several years. She then went to study mime with Jacques LeCog and I went back to LA. to study film at Cal Arts.
    I had been thinking about Tessa recently and went online to find my old friend. We had not been in contact since the 1980’s when she visited us in Malibu. To my great sadness I discovered her battle with ALS and passing. She was extraordinary–gifted, elegant,and incredibly bright. I regret the years we were not in contact….but cherish our life and fun together in the beginning of adult…before children, before all of it……when life was full of art and new dreams. Tessa Dinkeloo Diminish was simply lovely.

    • Lindsay
      January 4, 2015 at 9:52 PM

      Thank you Melinda for sharing your memories of Tessa! I think everyone who knew her loved her 🙂

  • Melinda littlejohn
    January 4, 2015 at 2:18 PM

    Please excuse my iPad errors. Dimin instead of Diminish…and a few extra periods. All that matters here is the regret of the passing of this truly gifted and loving woman.

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