My name is Scott Everson. I met many of you at Meatstock 2026 where we started a fundraiser for one of our organizers who’s going through a very challenging time with her daughter’s medical needs. We need to raise as much money as we can to help her get a life saving medical treatment.

Cutzi and her husband, Justin, adopted Adia at birth. She is now 18 years old and just graduated from high school. She has a rare genetic condition classified as a lisosomal storage disease. Her body doesn’t produce an enzyme needed to break down a substance in her body - in this case, sialic acid. Sialic acid then builds up in her body and becomes toxic, causing degenerative neurologic, vision and speech issues. Over the last year she has not been able to participate in her favorite recreational activities - snowboarding and skateboarding. She is noticing changes in her coordination and balance and has begun having trouble getting down from her loft bed or down stairs. But there is HOPE! Several months ago, a clinical trial began at UMass to develop a gene therapy that could possibly stop and even reverse progression. $1M is need to move on to the next stage of the clinical trial.

Your donation will go directly toward the clinical trial.

My hope is that we can all come together to help my good friend, Cutzi Jobes, and her beautiful daughter.

You can read more about Adia’s condition and the clinical trial at: https://www.curesialidosis.org