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.
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.
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.