Join Mark Mushin on October 11, 2021 for this special tribute fund drive.
Alyssa was born with a genetic brain disease called Canavan Disease. She was not able to walk, talk, feed herself, feeding tube, diapers and needed complete and total care. Once we found out what it was at 14 months old, the Dr’s told us to take her home or put her in a home and not get attached. At that time most kids only lived to be 5 – 10 years old. Despite all this, she filled everyone’s lives around her with pure love. We soon found out there was another family in CT, The Karlins. Roger Karlin an MD was trying to find Dr’s to research gene therapy.
We joined forces to raise money which ultimately led to the world’s first gene therapy trial. Dr. Matthew During who was researching gene therapy for Parkinson’s of all places was Yale. He agreed to take on the project but soon left Yale to go back to New Zealand. Due to all the red tape in the US, it was decided that we would go to New Zealand. This made world news: Time magazine, CBS This Morning, FOX and 60 Minutes New Zealand all did stories. This led to FDA approval and Alyssa was one of the first in the US to have another round of gene therapy at Yale a year later.
Fast forward to 2017. I received an email from Kelly Zirbis, a blues artist from CA.
I was already familiar with her because she sang a blues cover of You Are My Sunshine, one of Alyssa’s favorite songs my mom would sing to her. I got an email from Kelly asking if I would like her to record a promo for my show. I answered and asked if she could record it and include Alyssa, “Hi, this is Kelly Z you are listening to Mark Mushin on WPKN, his sunshine Alyssa’s favorite radio station.”
Later in the year in November, Alyssa passed away. I made the song one of my top 10 that year. Kelly sent me a message thanking me, I said the song means a lot more to me now that Alyssa passed away. There was silence on the other end, Kelly said she had to go. She contacted me 3 hours later and said she wrote a song. She asked my son Andrew and daughter Jenna to sing background vocals on the song. We flew to CA and recorded the song.
Now Kelly and her husband Perry are coming to CT for my son’s wedding. The following day they are coming to WPKN to perform live in the studio to help raise money to dedicate some of the new shelving in Alyssa’s honor, and the security system in memory of Allen Mushin who was in the security business for many years. We have a $1000.00 match in place. We will be streaming online and will be taking donations from 4-7 PM on October 11.