I am joining the I CAN MOVEment In hopes of raising funds and awareness for CURE VCP. VCP is a rare genetic disease that has affected me and several of my family members over the years. I am the youngest of six siblings, and the first to be tested for VCP. I learned that this is what has been affecting my family with the potential to affect future family members. My youngest sister has since, also tested positive for VCP. VCP can show up in several ways, for me and my family it has been IBM which is a debilitating muscle disorder and is what I have. Also FTD, a form of dementia, which is currently what my youngest sister has.
As kids, my sister and I would buy 45’s and she would make me dance with her when we played them, ha. My brother, who has passed away from the disease, made us a box in wood shop to hold all our 45’s. I still have the box and the 45’s.
The I CAN MOVE CHALLENGE that I am taking on is that I will play at least one 45 each day from June 23 through the 29th and dance, like my sister and I used to do. Unfortunately, my sister is unable to participate as she requires full time care, but she will be with me in spirit.
Because this is a rare disease, there hasn’t been any awareness or support till now. Please join me by supporting CURE VCP and thank you for any support you are able to give.
Go team Dancing Siblings!
