Shana Verstegen Shana Verstegen’s journey with the Huntington’s Disease Society of America (HDSA) is a powerful testament to her dedication to the HD community. For over two decades, Shana has been a steadfast volunteer, most notably through her creation and organization of the Re-Prom Celebration of Hope Gala. The idea for Re-Prom came from a conversation at an HDSA National Convention about high school proms, and it quickly evolved into an event to unite both HD families and the broader community. Since its inception in 2012, Re-Prom has raised over $1 million for the HDSA Wisconsin Chapter, offering a night of celebration, dancing, and joy to those touched by Huntington’s disease.
The event holds deep personal significance for Shana. “Re-Prom is a celebration of life, joy, and hope in the face of an incredibly difficult disease,” she explains. One of her most powerful memories occurred during the second year of Re-Prom in 2013 when Shana’s mother passed away just before the event. Despite their greatest loss, Shana and her father chose to attend the gala in her honor.
Surrounded by 250 attendees offering love and support, that evening became a powerful reminder of this community’s strength. Re-Prom has since become a cherished tradition that continues to bring people together in support of HD awareness and fundraising.
In 2014, with her husband Peter by her side, she took the genetic test and learned that she is not at-risk for HD. She is incredibly grateful that her 2 sons, Greyson and Clark will never have to live in fear of this disease. Despite Shana’s great news- Her commitment and dedication to HD families and to HDSA extends far beyond Re-Prom. Beginning her volunteer work at the age of 16, she joined the National Youth Alliance and later served on the Wisconsin Chapter’s Board and as its president. Even after stepping down from formal leadership, Shana remains involved, organizing various fundraising events such as the Charity Log Rolling Tournament and the Team Hope Run/Walks. Her personal journey with Huntington’s Disease has shaped her life, and she continues to honor the ‘chosen family’ she has built through HDSA, even as she battles the disease’s impact on those she loves.
For Shana, the HD community has been a source of strength and purpose. “Volunteering with HDSA started as a way for me to cope with the reality of HD in my family—it made me feel like I was doing something. Over time, it became my life’s passion,” she shares. Her work with HDSA has not only allowed her to honor her mother’s memory but has also connected her with some of the most courageous individuals she’s ever known. Her dedication to raising awareness and supporting those affected by Huntington’s disease is truly inspiring, and anyone who meets her can testify to Shana’s contagious passion.
