My mother died after having ALS for three years--that we know of--in 1983. I was 21. I missed getting to know my mother. She was a lot of fun, but I didn't get to experience that adult side of her. I respected her greatly and even worked at the South Orange Public Library in the children's room alongside her. I also loved her to the moon and back. Don't get me wrong--we fought. She was as stubborn as I am. I remember times when she would get so angry because she had trouble making me understand. One particular story I remember was when she was trying to explain about Alexander Dumas (Pere and Fils). I just didn't get that they were father and son, but I will never forget it now. I laugh every time I think about it. It's the silly things that you remember the most, or at least that I do. I will never stop missing her.

My sister Meg, who anyone reading this story knows, tirelessly advocated for ALS treatments, research and a cure for ALS, and for the ALS Association, and she made my family help her out. Talk about stubborn! LOL! She died of glioblastoma (another unfair disease) in 2021. Before she got sick, I used to muse what is worse: losing your physical faculties or losing your mental ones. Now having experienced seeing some die from each, I couldn't choose. I just know that I would not wish another of my family members or friends or anyone for that matter to suffer with either.

As a note, my late husband's brother John died from ALS last month. His trajectory was quick, and whether that was merciful, I will never know.

Now that I have dried my tears, I would like to add the regular pitch:

Thank you for visiting my fundraising page. I'm participating in ALS United Greater New York’s Walk ALS to raise funds that will support individuals and families affected by ALS.

Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of a person with ALS averages 2 to 5 years from the time of diagnosis. ALS can strike anyone regardless of age, gender, nationality, or ethnicity, although it is primarily an adult-onset disease. Currently there is no known cause or cure.

Being a part of ALS United Greater New York’s WALK ALS is the number one way to unite and fundraise for those living with ALS. Please consider supporting my efforts by donating through my fundraising page.

Your donation today will help fund resources and services to the local ALS community, help find new ALS treatments, and move us closer to a world without the disease.

Please feel free to send this page to any friend or family member who might be interested in donating!

In solidarity with good and and not so good memories,

Karen