PAW PAW – The seventh annual Champions for HD Benefit Concert, held Saturday, Oct. 12, at The Lucky Wolf Theater, Paw Paw, saw more than $5,00 raised to help families fight Huntington’s Disease.
Shelby Lentz began Champions for HD, after the disease struck her family. “After being the fourth member of my family to be diagnosed with Huntington’s Disease, I began my non-profit Champions for HD to help families like mine fighting this terrible disease,” said Lentz, who was one of seven different musical acts to perform.
“As a musician, I knew I wanted one of our annual events to be a benefit concert where we could highlight both Huntington’s Disease and local talent,” said Lentz, following the event.
“This was our seventh annual benefit concert which is so surreal to see how far we’ve come. Since 2018, we’ve raised over $100,000 and helped over 80 families in need. This was our first year being hosted by The Lucky Wolf, Paw Paw, and we cannot thank them enough for supporting us,” said Lentz.
“We had many incredible performances this year, including ventriloquist Brynn Cummings, of Paw Paw, who was a finalist on America’s Got Talent last year,” said Lentz. The event also featured a four-song performance by the Vineyard Chicks, a three-sister musical group from Lawrence, who was one of 10 music groups to compete last month in the Michigan State Fair Superstar Contest.
Other performers included Delany Lentz, Bernice Rodgers, Teddy Brewer, and Corey Zumsteg.
“We are still tabulating the final results, but as of now are at over $5,000,” said Lentz, of the Saturday night event.
Champions for HD is a non-profit in the fight against Huntington’s Disease. Founded in 2018 by Lentz, who drew inspiration from the Rocky Balboa movies, this non-profit aims to not only fight for a cure for Huntington’s Disease, and Juvenile Huntington’s Disease, but to help those who are struggling with this disease with financial aid.
Huntington’s Disease is a terminal, genetic disease that causes the brain to deteriorate over time, making physical and cognitive tasks – such as eating, walking, talking, processing – almost entirely impossible. According to Lentz, HD is said to be equivalent to having ALS, Alzheimer’s, and Parkinson’s simultaneously. The progression of the disease in adults typically happens between the ages of 30-40 and has an average 15-20 year lifespan once the onset begins. It eventually leads to being physically and cognitively impaired. Every parent with the disease has a 50/50 chance of passing it on to their children. Lentz said an even rarer form of Huntington’s Disease, the pediatric form known as Juvenile Huntington’s Disease, appears in children. Juvenile Huntington’s Disease will onset before the age of 20 and the decline is even more rapid than the normal Huntington’s patient. JHD children average a 10–15-year lifespan once the onset begins.
Founder and president, Lentz, has made it her mission to not only further HD research funding, but help families like her own that are struggling. After her grandfather, father, and 12-year-old sister (diagnosed with Juvenile HD) were diagnosed, she decided to get tested herself. Also receiving a positive diagnosis at 20 years old, she has watched HD take so much from her family. After watching her father struggle for over two years to receive disability and her sister suffered with JHD in the hospital, and the medical bills taking no mercy, she created Champions for HD to assist other families who are struggling with the mental, emotional, and financial burden HD brings while also funding and furthering HD research. In 2020, Juvenile Huntington’s Disease took the life of her sister, Breanna, at only 14. “Bre had completely lost her ability to walk, talk, and eat by the time she was 12,” said Lentz. Without a cure, Lentz and many other HD patients hold the same fear of this fate.
According to Lentz, in the HD community, many families struggle with both emotional and financial burdens. The anxiety of trying to pay bills for medical and legal purposes, such as genetic testing, attorneys, counseling, medication, in vitro fertilization, and more, take a huge emotional and financial toll on these families. “Many individuals with HD wait an average of two to three years to receive any disability approval or funding as well. Our job is to raise awareness of this disease and provide support to families impacted by HD. We also aid local promising research that is taking place, not only in the state of Michigan, but nationwide. We host four annual events and have raised over $100,000 and served over 80 families throughout the United States battling this terrible disease,” said Lentz.
Saturday’s event at The Lucky Wolf was sponsored by Gold Sponsor B&L Information Systems. Bronze Sponsors included Silver Beach Pizza and Harding’s Friendly Markets.
For more information, visit: championsforhd.org.
