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About Us
Together we are fighting HD one story at a time.
Champions for HD: Est. April, 2018
*Official 501(c)(3) nonprofit.
Champions for HD is a non-profit in the fight against Huntington's Disease. Founded in 2018 by Shelby 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. 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 years 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. 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, Shelby 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 suffer 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. Without a cure, Shelby and many other HD patients hold the same fear of this fate.
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 2-3 years to receive any disability approval or funding as well. Our job is to bring 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 4 annual events, and have raised over $60,000 and served over 70 families throughout the United States battling this terrible disease.