“My husband, Mickey, was diagnosed with ALS in 2001 at the age of 49. We were told by doctors to contact hospice and enjoy the rest of his life. We didn’t accept that. Then we found Project ALS.
The reason we chose to work with and support Project ALS came down to one thing…hope. Project ALS was not giving up then and they are not giving up now. They are hopeful, determined, and unrelenting in their search for a cure. That’s what we needed to see. That’s what all people diagnosed need to see…that there is hope.
Mickey lived with ALS for ten years. We were forced to experience first-hand the horror this disease inflicts on the person suffering and the family who loves them. Even though this research could not save my husband, I truly believe that it will save people in the near future. We will continue to support this research until Project ALS finds a cure.“
In 2020, Cathy and Richard called Project ALS after hearing about the development of a novel antisense oligonucleotide (ASO) therapy for people living with FUS ALS. So was born NextGen ALS, a Weber family initiative in collaboration with Project ALS that is committed to raising funds for targeted research toward treatments and cures for genetic forms of ALS.