Hello, My mother and her family carry the VCP gene. Unfortunately after losing my mom, I found out I was a carrier and not to long ago my youngest tested positive as well. It's been a shock to think about this affecting me and knowing my fate but my angel, Nadia changed my mindset. "Mom look at me now, no one will ever stop me" she screamed as she ran, jumped and played Volleyball. I've lost a lot of my family to this disease and have many that are sick because of it. But like Nadia who is 14 years old I will live for the now, and strive for the future. Please any little bit helps and we both appreciate your help.