Why ALS Research Matters

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Bob Nivin I’ve probably seen hundreds of ALS Ice Bucket Challenges show up on my various social media feeds by now. I’ve only actually clicked on just a handful.

It’s not because I don’t care.

I think the #IceBucketChallenge may go down in history as the most successful social media campaigns ever.

It is certainly a novel idea.

It’s very easy to be a participant and make your own video to share with your friends and followers.  After all, it’s all  in the name of charity!

 

 

 

Bob Nivin While I can’t speak for my entire family, I can safely say that my immediate family won’t be posting an ice bucket challenge any time soon. 

We had our own very real challenge involving  ALS.

It’s a dreadful disease.

It took the life of my father-in-law.

He started to show signs of the illness the year before our wedding.

It had worsened enough that he had to buy a walking cane the night of the rehearsal dinner.

Bob Nivin He didn’t want to fall as he was walking up the aisle in the church.

We had no idea that it wouldn’t be long before he couldn’t walk at all.

It took doctors a while to diagnose him.

It is just so rare.

And then the world changed for my husband’s family as his doctor finally informed him of the name of his illness.

Amyotrophic Lateral Sclerosis or Lou Gehrig’s disease as we most often called it. No one knew what it was at the time.

ALS.

There has been very little research done in comparison to other diseases.  No pink or yellow ribbons have been worn in support.

Until now, with a simple bucket of ice.

Our prayer is that this new awareness of ALS and money for research that has  been raised will soon spare lives.

Bob with one of his favorite nurses.

Bob with one of his favorite nurses.

It could be someone like Bob.

A man devoted to his family.

A husband, father and grandfather.

A successful salesman.

A man who loved to coach soccer.

A man whose deep, reassuring radio personality voice was taken by ALS as his muscles started to atrophy. 

A man so spiritual that his friends would come to see him as he was hooked up to breathing machines.

They were in search for their own guidance as he was unable to move. Everyone just felt better being near him.

As silly as an ice bucket challenge may seem, it matters.

ALS research matters.

Bob Nivin mattered.

 

 

 

 

 

Stay Sassy Y’all. 

 

 

 

 

 

 

 

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Comments

  1. Well said, Laura! My friend Sara lost her husband to this horrible debilitating disease last January. I have watched the ice bucket campaign with awe of how such a simple thing could raise awareness and was challenged myself today. I will donate and share but not do the challenge because I would rather donate! I am sorry for your loss!

    • Oh gosh, Linda, I am so sorry that your friend Sara lost her husband. I just hope and pray that with all this new funding for research, that a cure will be found soon.
      One family is way too many for this terrible illness.

  2. Jane lane says:

    Laura, that was just right, and so right.

  3. Diane Lawson says:

    Oh Laura I have thought of Bob so often through the years but certainly the last couple of weeks. He was such a wonderful man. I hope that with increased awareness of this horrible disease, comes a cure. Thank you for your post and the photos. Love to you, Steve and the kids.

    • Thank you Diane. It seems like he was just here. I just wish I would have gotten to know him a little longer. And love right back to you.

  4. Norma Garza says:

    Laura,

    Thank you posting this story. I was also challenged to do the ice bucket challenge but I will donate instead. I lost my dad to ALS in 1997 at the age of 62. I am grateful that there is increased awareness of ALS. My hope is that one day they will be able to find a cure.

    • Norma, I am so sorry to hear about your dad. And that is the same year that Bob passed away. I do hope the find out what causes it. I know research can only help.

  5. Laura, this brought back so many memories and tears! We go way back with the Nivin family and I can’t begin to tell you how hard it was to see Bob decline so fast. The last time he could still manage to say a few words, he looked at Ben and said “I used to look like you!”. It nearly killed both of us to see him like he was. All during high school people would walk up to me and tell me that Steve played a good game and the same with Sue, she would be told something about Brent. One night at the Booster Club meeting just Bob and I were there and this one lady said she had finally figured out whose Steve’s parents were. Bob laughed and told her I was Brent’s mother. She just shook her head and walked away! He was one of a kind and we still miss him! We will be making a donation in his honor. Love you all and am so glad we introduced you to Steve!

  6. Karla McNickle says:

    What a touching story. How long did you have the privilege of knowing Bob?

    • I first met him in June of 1993 and he passed away in December of 1997.
      It wasn’t near long enough! I have the privilege of being his son’s wife. He reminds me a lot of Bob.

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