• Posted by Amanda on August 16, 2019 at 9:42 pm

    Earlier this week I lost another family member to ALS. It’s wasn’t completely unexpected as she had been diagnosed 15 years ago and I knew she had been declining more quickly  the past 6 months. She was strong, loved her family and found purpose in a situation that many would just simply choose to give up in. She was the picture of determination and perseverance.

    I’ve put off watching Gleason for a while now because I knew it would evoke a mixture of emotions. I have read about Steve’s attitude regarding life, and his ALS diagnosis and that reminded me of my cousin.  After diagnosed they both reflected on what is truly important to them including living life to its fullest, choosing to focus on relationships and family, and fighting for something they believe in or believe should be.

    ALS is so much more than just another rare disease to me and my family because it has taken so many of us.  As a matter of fact it doesn’t seem that RARE to me at all! I know that it impacts far less people than cancer and other more common diseases, but when you have watched it take one family member after another it just does not feel “rare.”

    As for Gleason, the movie, I decided tonight was the night. I’ve followed the New Orleans Saints for decades, watched the game when Steve blocked the punt that changed everything and inspired a community after Katrina &  I lived in New Orleans when Steve announced to the world he was diagnosed with ALS. Tonight, as I think of all the ways my cousin fought ALS and made a difference….she made sure her children and husband knew they were her inspiration and reason for living, she was determined to live, really live and enjoy life, and she raised awareness, funds and went to Washington D.C. to fight for our cause in hope that funding would be provided to find a cure.

    I am midway through the movie and I can see that my cousin & Steve shared many beliefs and personality traits. I respect their choice to live well, focus on the good and thier desire and commitment to make a difference in the lives of others with ALS.


    What movies and who have inspired you?

    Amanda replied 4 years, 9 months ago 1 Member · 0 Replies
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