My grandfather, or Papa as I called him, was a giant to me. He was a former mayor of Richmond, city councilman, and Richmond Public School principal. Every inch of the city of Richmond, where I now reside, is a daily reminder of him: the decades he spent teaching in Richmond classrooms, City Hall, and local shops. He is an inseparable part of this city. Born here in 1930 during the Great Depression, he combined his steely work ethic with his value for education to earn a bachelor’s degree from Virginia Union University, a master’s degree from New York University, and later a doctorate from George Washington University. While pursuing his advanced degrees, he worked in Richmond to instill those same values in schools around the city. He expected excellence wherever he went, and even today I am always looking to honor him and to make him proud.

In 2021, I ran the Richmond Marathon to honor my Papa and raise funds and awareness for CurePSP. Throughout my training, he would always appear to me in various ways when I ran around the city. I could literally feel his presence everywhere that I went due to his professional and community involvement. My Papa was known throughout the city. Many people have special relationships with their grandparents, but mine with my Papa was truly unique. I lived with him on and off as a young adult and learned so much about who he was, his passions, and his work ethic. Every day, he told me to “never take any wooden nickels” from anyone and that motto, helped mold me into the woman I am today. Living with him while he was healthy and during his final years allowed me to identify the startling changes in his health, get him the medical attention he needed and care for him until the very end.

After a misdiagnosis of Parkinson’s disease in late 2017, he was officially diagnosed with progressive supranuclear palsy (PSP) in early 2018. Up until November 2017, my Papa was still riding around Richmond and “roaming” at his favorite stores as he called it. Because of his advanced age, his condition deteriorated rapidly. I watched my Papa go from walking unaided, to using a cane, to moving around with a rollator, to eventually being completely wheelchair-bound. Nothing prepares you to care for a loved one, but I am grateful that I spent so many days by his side and had resources like CurePSP, which helped me understand the severity of the disease. I’ll always remember talking about life; holding hands and laughing together; loving, learning, and uplifting him.

During one of our many conversations, Papa shared with me that when he was gone, he did not want to be forgotten. I think about my grandpa daily, but this comment has stuck with me every day since his passing. I actually chuckle at the thought of him thinking I could forget him because he’s left an indelible mark on my life and that of so many others. My grandfather was notoriously no-nonsense, and as his granddaughter, I was not immune from this. Although remembered for many things, my grandfather was hard-working, loving, compassionate and funny.

The CurePSP community plays a crucial role in providing hope for families like mine. There are resources available for people at any stage of the disease journey, and through events like the Roy A. West Fundraiser Walk, we want to spread awareness and raise funds that are so necessary for progress, proving that the need for care exists and that no one is alone in this. We want to support CurePSP’s ambitious research efforts, funding cutting-edge projects in hopes of diagnostics and therapeutics, their expansive network of support as well as awareness that will lead to an increase in clinical trials. It is an exciting time for CurePSP, as there have never been so many resources available to our community.

The Dr. Roy A. West Legacy Fund will be supporting the CurePSP Cure pillar, dedicated to funding critical research and developing clinical trials to prevent, slow, halt or even reverse disease progression, as well as the Quality-of-Life Respite Grant, devoted to easing the burden on families who accomplish amazing things every day. With your support, we look forward to helping families improve the quality of life of their loved ones today while also imagining a brighter future with more plentiful treatment options.