25 years ago, my mother Mary died from ALS.  She was 44.

Mummy was my age when she was diagnosed with this terminal illness, also known as Lou Gehrig's disease (after the baseball player) or Motor Neurone Disease in the UK. I was 4, and my sister was just a baby. Mummy was told that within months, holding her baby daughter would be impossible, and within a year she would lose her ability to speak. Though her mind would remain as sharp as ever, ALS would cause the death of neurons that controlled her muscles.

Within a few years, Mummy lost the ability to move any muscle other than blinking her eyes. Brilliantly, a cutting edge computer program was developed that allowed her to utilize her blinking in order to communicate with us.  

It changed our lives. Mummy used that computer to ask me how my day was. To remind me to be a "good girl" as I would run out the door. To let me know that my piano practice wasn't up to snuff. To teach me how to prune our rose bushes. To sing "Happy Birthday" to me every December 11th morning.  

Mummy used that computer to tell me that she was going to die, and that there was nothing anyone could do to change that fact.  

I have spent the last 25 years being heart-broken over my mother's death. Too heart-broken to even look at a picture of her beautiful face. Too heart-broken to think about ALS or try to help the world eradicate it. But that changes today. I have enlisted my amazing husband Dennis to race the Bermuda Triathlon this April in honor of mummy. He will run, bike and swim to commemorate the fact that she couldn't.  

We are going to spend the next 25 years raising awareness and funds to end this horrible disease and improve the lives of those living with ALS. Our fundraising will benefit the ALS Program at Hospital for Special Surgery, which is run by the brilliant Dr. Dale Lange, HSS' Neurologist-in-Chief, whom I am honored to call a friend.

I am asking, from the bottom of my heart, for your help. Cheer Dennis on. Honor my mother. End this disease.

With love,

Roseline Michael Neveling