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We Want to Hear YOUR Story Our mission is to use our voices to raise awareness for Huntington's Disease, and we can do this by sharing our story. We want to allow everyone in the HD community, who feel comfortable enough, this opportunity through Champions for HD. We would love to hear both the struggles and triumphs of HD , how it has impacted your life, and/or how you are making a difference. Whether you are living with HD yourself, at-risk, a caregiver, friend, family, doctor, specialist, etc. this is a safe platform for you to share both your good times and bad. By submitting, your story will be shared on Champions for HD media to reach others in the community. If you would like to remain anonymous, please let us know. Thank you for your bravery.

Champion Donation Stories

We are proud to have raised over $100,000 for Huntington's research and families. $7,000 Over $45,000 To local research in Hopkins, Michigan and Sioux Falls, South Dakota for The Shepard's Gift: Gm1 for HD To more than 80 families facing unemployment, medical and housing bills, awaiting disability for HD, etc.

Downloads Champions for HD Brochure PDF

HD Awareness Month at South Haven Brewpub December 9, 2023 South Haven Brewpub | 5-7 pm Join us for food, drinks, Christmas trivia, photos with Santa, an Ugly Christmas sweater contest and more! *No tickets required for entry RSVP On Facebook

Upcoming events... February-March TBD Concert of Hope - Fort Wayne, Indiana November Annual Benefit Concert December Miracle at Southhaven Brewpub (Christmas Party)

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. Donate

First Annual Champions for HD Benefit Concert- 2018 Out of gallery

Miracle at South Haven Brewpub

6th Annual Benefit Concert Performers Shelby Lentz (Smith ers) Shelby's Website While she may be petite in stature, Shelby Lentz has a voice that will fill any venue. At just fifteen she opened at The State Theater in Kalamazoo for Warner Music artist, Frankie Ballard. It was also about this time that she began collaborating with local song writers on original music as well. She went on to also open for former American Idol finalist, Matt Giraud, as well as international recording artist, Joanne Shaw Taylor, and country act, Montgomery Gentry. Shelby spent two years pursuing music in Nashville, Tennessee where she attended Belmont University and worked at the Grand Ole Opry. She recorded two studio EPs while in Nashville and performed on Broadway at the famous Tootsies. Her second EP, entitled “Unbroken” features a song called “Champion” Lentz co-wrote with her friend, Jessica Kellie Adams, inspired by Sylvester Stallone’s Rocky Balboa films. After the diagnosis of Huntington’s Disease in her family, and being recently diagnosed herself, she began her own nonprofit, “Champions for HD” to help aid research as well as other local families struggling with this disease. This was named in honor of her song “Champion” that is now recognized as an HD power anthem and part of her musical proceeds go back to Champions for HD to further the fight against Huntington’s. Shelby recently release her fist official album "Teenage Diary," all songs she wrote between the ages of 13-19, which is streaming everywhere now. There is no doubt that this little girl packs a powerful punch as an experienced entertainer. Sarah Dudinetz After graduating with a degree in Advertising & Public Relations from Grand Valley State University, Sarah started working at A.K. Rikk's as a Social Media and Communications Specialist. She has been a competitor in the Miss America Organization for a decade (which is how she got to know Shelby), and was first-runner up at Miss Michigan in 2019. While she has no personal connection to Huntington's Disease, as she's watched Shelby passionately share her story, she decided to use her skills and talents to help Shelby through marketing. Sarah's Website Delaney Lentz Delaney is a recent gradate from the University of Alabama, with a degree in Marketing. Currently, she is pursuing a master's degree in data analytics at Loyola University. She is Shelby's sister, and is at-risk for inheriting Huntington's Disease. She has seen first hand the trauma of HD as four of her family members currently have the disease. Delaney also has a passion for the arts and has been singing and performing for years with her sister, in musicals, and at local Miss America pageants. At Alabama, she was in HallyUA, a dance and social club centered around Kpop at the University of Alabama. Follow Delaney Bernice Rodgers Bernice Rodgers currently resides in Niles, MI with her husband of 18 years and her two children both 9 and 17. They say she came out the womb singing! She has a great passion for singing and acting and has been in local plays, musicals, and such things over her 40 years of living. She has a deep passion to serve and help others which is why she chose to go into the medical field. These days she spends her time serving at her local church by singing on the praise team and helping in the outreach ministry, “for God is yet in the saving business!" Back at home she is the primary caretaker to my aunt who has HD. They have our good and bad days, and many challenges, but with God all things are possible and He gives her the strength to take care of her each and every day. She truly believes this is what she was called to do, to God be the glory!! With much prayer and getting more awareness and studies on this illness she believes they can find better treatments and make life better for those who suffer from HD. Thank you to our Sponsors: