Why We Raise Money for ALS Research

by Mady Alnemy, Music Director

In 2004, a six-year-old watched her great-uncle get lowered into the earth. She broke down sobbing in the back of her grandmother’s SUV. She didn’t have to spend all that much time with him while he was alive to feel the powerful waves of grief that poured out of her family members that stood beside her. While her peers back at school were coloring on the blacktop, she was asking her mother why a funeral has an after-party, “why an after-party mom? I thought this was a sad time.” The years leading up to his death consisted of many visits to Long Island where she witnessed her great-uncle’s paralysis steadily worsened until he was no longer able to speak.

Spoiler: the little lady described is yours truly. ALS affects only 20,000 people a year and three people in my family have fallen victim to this terrible disease. It is a neurodegenerative disease in which the victim’s motor neurons gradually die eventually preventing the person from moving, eating, speaking and breathing. To add icing to the cake, receiving the ALS diagnosis is practically being stamped with an expiration date. There is no cure.

Twenty-thousand people a year may seem like an inconsequential number but that number is only a fraction of those actually affected by the disease. Double that number once for every daughter, son, brother, sister, lover, friend, etc. that had to bury their loved one that year. I remember when my grandmother’s cousin announced his diagnosis to the family. Even as he informed us of his fatal diagnosis he chuckled, “it isn’t that bad.” Bullshit. The next time I saw him he was walking with a cane, the time after that a walker, the following time a wheelchair and the final time, he was lying in a casket.

Sad story aside, these experiences have inspired and motivated my family to work towards ensuring that no one else will be cursed with ALS. Every year my family, religiously attends the ALS walk in Long Island. It even inspired my sister to become a scientist and research medicine. After my mom sent me a link about students raising money for ALS, I was inspired to initiate a cause at WBRS.

I’m eternally grateful for the help and support of those at WBRS who have shared my enthusiasm from the beginning. Thank you to Maxwell and Matt who bit the bullet and danced around in a sandwich board outside our events to encourage donations at the door. Thank you to Charlotte for helping me meticulously cut out the pin-ups. Thank you Sarah, Aaron, Isaac and everyone else who shouted to the masses “donate for a donut” to rack up $150 dollars in donations at the Sidney Gish concert. My gratitude extends to everyone in WBRS and everyone who’s donated because every single one of you have contributed to the $500 dollars WBRS has raised for ALS so far.

But it’s not over. We have $500 more dollars to raise for ALS before the end of the year and there is no doubt in my mind that we can do it. If you’re a previous donor, share the picture of your pin-up outside of the WBRS studio. We are always collecting donations via cash or Venmo @MadyAlnemy and if you don’t feel comfortable with that, donate directly at als.org and let WBRS know you did! WBRS, everyone affected by ALS, and I appreciate any support that leads us closer to keeping six-year-olds away from ALS funerals. Thank you.