After Family’s Diagnosis, Shelby Lentz Becomes Champion for Patients
A few years ago, Shelby Lentz wrote a song called “Champions,” originally inspired by the “Rocky” movies. The plucky country anthem has since taken on a deeper, more personal meaning as she and members of her family battle Huntington’s disease.
“We wrote this entire song, and I recorded it and released it. And then I found out that Huntington’s was in my family all within the same year,” Lentz, 24, who writes, records, and performs music in her spare time and lives in Western Michigan, said in an interview with Huntington’s Disease News.
“I wrote this song thinking it was gonna be more so for other people, and then all of a sudden, I needed the song for myself to get over my [Huntington’s] diagnosis.”
Lentz’s grandfather was diagnosed with Huntington’s disease in 2016, then her father, 52, and then her younger half-sister, Breanna, who died from the juvenile form of the disorder last year at age 14. Lentz herself was diagnosed in 2017.
It was the message of the song that has allowed her to get through her own challenges living and seeing the impact of a rare disease on her loved ones.
“Fighters fight, roll with the punches, that’s how winning’s done, doing one more round when you don’t think you can, but baby, that’s what makes a champion,” she belts out in the song.
The champion’s mindset Lentz developed also was an inspiration to start the nonprofit Champions for HD in 2018. It focuses on funding research and providing financial assistance to families affected by Huntington’s disease.
“I want everyone who has Huntington’s to know that they have an inner champion and that they can fight through this,” said Lentz, who also works full time for a marketing company. “And it’s not going to be pretty; it’s not going to be easy.”
In the past three years, Champions for HD has raised more than $30,000, most of which has gone to help 52 families with various medical expenses related to Huntington’s. The organization has helped patients and families pay electric bills, fund funeral services, and get genetic testing, for example.
One of the people helped by Champions for HD was Mariah Trautman, who now serves in a volunteer capacity as a social media ambassador for the organization. Her nephew, Jay Hersho, died from juvenile Huntington’s disease on Dec. 3, 2020, and Champions for HD covered the difference between what was raised from the family’s GoFundMe page and the total funeral costs, a difference Trautman estimates was $500.
“I appreciate everything that they do to bring awareness to Huntington’s disease financially and emotionally,” Trautman said. “What they have given to families is amazing.”
The rest of the money raised by the organization, which added up to $2,000 in 2020, went to help fund a $10-million research project that will study the potential of a molecule called GM1 ganglioside to treat Huntington’s. The nonprofit foundation Shepherd’s Gift is leading the study and is dedicated to moving GM1 sourced from sheep through the clinical trial process for Huntington’s. Shepherd’s Gift is partnering with farmers who are willing to raise the sheep that will provide the GM1 needed to treat patients.
Although GM1 has yet to be studied in Huntington’s patients, a 2017 study in mice showed that it was able to decrease levels of mutant huntingtin, slow down neurodegeneration, and improve motor function. GM1 also was studied in a randomized Phase 2 trial (NCT00037830) in Parkinson’s disease patients, in which it was found to ease motor symptoms and slow disease progression, compared with a placebo.
Because Lentz’s nonprofit relies on in-person events to raise money, the COVID-19 pandemic affected its ability to fundraise. The past year has seen a nearly 37% decrease in total funds, according to the organization’s annual report. With some COVID-19 restrictions lifted, Lentz now will be able to resume in-person events.
In a typical year, Champions for HD organizes four fundraisers, one of which coincides with Rare Disease Day in February and another with Huntington’s Disease Awareness Month in May. In addition, Lentz hosts an annual benefit concert where she and other artists perform, and in December, she puts on a Christmas-themed concert at a local pub.
Last February, a dress store in Lansing, Michigan, organized a raffle and auction to benefit Champions for HD while patrons were trying on outfits.
Lentz is also raising awareness of the disease and honoring her sister Breanna’s legacy by helping others living with juvenile Huntington’s disease. She recently published a children’s book about Breanna, which helps younger people understand the disease while also making Breanna’s personality come alive.
“She continued making other people smile because she knew how hard life could be and never wanted anyone to feel left out and never wanted anyone to be sad,” Lentz said.
“Brave Breanna: How One Girl Smiled Her Way Through Juvenile Huntington’s Disease” was released July 28 and now prints on demand through Amazon. So far, Lentz has sold 250 copies worldwide, and two people are translating it into German and Dutch.
“Not only is the book talking about juvenile Huntington’s disease in a kid-friendly way, but it’s also just a good overall message for kids and adults alike that there’s always something even in the worst of situations that we can smile about and be grateful for,” Lentz said.
While Lentz keeps a positive attitude through her adversity, she admits it hasn’t been easy, between her diagnosis and her grandfather’s and father’s slow physical and cognitive decline.
But for her, starting a Champions for HD podcast in May 2020 — where she can interview other Huntington’s disease patients, caregivers, and family, and discuss her feelings of grief after losing her half-sister — transferring her emotions into song, and aiding others through her nonprofit have helped her and many others get through the ups and downs of the disease.
“[Lentz] is one of the most down-to-earth people I’ve met,” Trautman said. “She really seems to care about everybody who’s involved and it’s more on a personal level than … just helping an organization.”