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  • Cure VCP Disease, Inc.

Meet Katie Carter

I'm Katie Carter. I have VCP disease. It is a rare neuromuscular disease that has impacted my

family for generations. It affects me, and I can't be silent about it, even on the fourth of July!

My mom was an auditor for the IRS in the 1970s and opened her own tax business as a part-time gig. In the 1980s, her business grew tremendously, and by the mid-1990s, she had hundreds of clients. I joined her firm in 1996. It was just the two of us until she retired in April 2005. Most of those clients saw my mother's decline from VCP disease. My mom's arms went first, then her legs. She couldn't climb stairs and used a walker for a short time before moving to a powerchair. She used a Hoyer lift to get in and out of bed. Watching my mother deteriorate from VCP disease was tragic. My mom was only 56 years old when she died. She was too young! There isn’t a day that goes by that I don’t think of her and wish she was here. We were robbed of time.

VCP disease is an adult-onset rare disease. I started showing symptoms at the age of 30. First, my arms weakened so I couldn't raise them above my shoulders. Then, a few years ago, my legs were impacted. My mobility continues to get worse. It’s a very frustrating disease that affects my mental health too.

I’m in my 40s now and my timeline closely resembles my mom’s and other family impacted by the disease. I am losing the ability to do the things I enjoy. I’m unable to be the active woman, mother, grandmother, and friend I want to be. I miss traveling with ease and simply living an independent life. The mental strain of being a burden on those I love and the chance that I may have passed these terrible genes on is too much to handle some days. I don’t have much time and it terrifies me! I love traveling even though it is hard for me. In just a few weeks, I will join other VCP disease patients in Las Vegas for the VCP Connections Conference - 2023 Family Gathering. I enjoy going each year. I invited several friends to go with me this year. It is sure to be a great time and I can’t wait to see those facing similar struggles like me! I have formed friendships with other patients and their family members. We learn. We share. We cry, and we cheer each other on. It’s not too late to join us. We hope to see you there!

I hope to share information to help others learn about the disease and to assist the Cure VCP Disease organization in finding treatments and a cure. I want to be a part of the solution. This organization needs everyone, including you! Won't you please consider being a part of the solution?

Also, you might be able to double your impact… I encourage you to check with your employer, as many companies match their employee’s charitable donations.

Thank you for your generosity and for helping me and many others with this terrible disease. It takes a village! Happy 4th of July, and I look forward to seeing you in Vegas!

Yours in Hope,

Katie Daughter, Friend, Mother, Grandmother, Accountant, and VCP disease patient


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