The 10th anniversary Gala for the Bev Hartig Huntington’s Disease Foundation is coming up, and it’s not going to be the average fundraiser gala. But, then, Huntington’s Disease is no ordinary neurological disease.
Fishers resident Bev Hartig suffers from Huntington’s Disease (HD). She and a group of friends established the foundation in 2010 to raise money to find a cure for the disease. This year, the foundation is celebrating its 10th-anniversary gala Saturday, April 27 at 7 p.m. at the Forum Conference and Events Center, in Fishers.
The theme for this year’s milestone celebration is “A Musical Celebration of Giving.” Guests will enjoy a red-carpet experience complete with a sit-down dinner and special musical guests. Songwriter City will delight guests with their award-winning songs which they wrote for artists including Faith Hill, Rascal Flatts, Keith Urban, Carrie Underwood and more. For an even bigger treat, the songwriters will share the stories behind the Grammy and Country Music Award-winning songs.
The journey to the foundation’s 10th-anniversary celebration has been filled with mixed blessings, all starting with Bev. She grew up with a beautiful childhood full of blessed memories with her adoptive family. In 1992, Bev’s birthparents sought her out, and she was blessed to find out they’d later married and had more children, giving her new siblings. She and her husband Bob married in 1997, and just a year later, she got a devastating phone call that her birth father had been diagnosed with Huntington’s Disease. She knew nothing about it, but she soon learned all about the degenerative neurological disease and that she and her siblings would have a 50 percent chance of inheriting it.
Making the choice to arm herself with knowledge, Bev took the blood test and learned she, in fact, carries the gene to the disease that would take her birthfather’s life in 2006 at age 57. But Bev didn’t make her diagnosis 20 years ago the end game.
“Bev’s mission has always been to educate people about the disease and create awareness, encourage them to donate to the foundation and to believe that a cure will happen,” Board member Cecilia Coble says. “Bev firmly believes that together, we can make this the last generation with Huntington’s Disease.”
Knowing the headline about Huntington’s Disease is just a start. For people who know little about the rare neurological disease, HD might seem to them like MS or MD. But that doesn’t even scratch the surface. HD is inherited at birth and usually surfaces between the ages of 30 and 40. A gene causes the nerve cells in the brain to gradually break down over time, causing symptoms like difficulty balancing, experiencing involuntary movements or muscle twitches (chorea), slow mobility, decreased mental acuity, lack of concentration and, ultimately, losing the ability to walk, chew or swallow.
At this point, Bev’s symptoms have progressed to the point where she needs constant assistance with daily tasks like walking, standing and even eating.
“Bev often notices that many people who see her in public remark that she looks intoxicated,” Coble says. “She wants to change that stigma and create awareness so that people don’t judge.”
Bev’s appetite has been impacted because she’s in danger of choking on even soft foods and liquids. Her speech is slurred as the disease has slowly taken control over those muscles. Besides fighting her symptoms, Bev’s top priority is to take care of her family, husband Bob, daughter Katie (age 16) and son Ryan (age 15). It’s not an easy task not just because the kids are teenagers, but because Katie is also a special needs child and needs assistance as well.
A special group of friends from her neighborhood has been by her side every step of the way to help her.
“Bev has been unable to drive for about five years now. So, that special group of neighbors and childhood friends take her to do errands, take her to lunch,” Coble says. “Being with Bev changes the way you see the world.”
As difficult as it is to see their friend struggling, there is no other place they would rather be than by Bev’s side.
“She’s known for her bubbly spirit and smile,” Coble adds. “She’s got spunk and she’s got a deep faith.”
Many of those close friends and neighbors round out the foundation’s board and committees. The entire team has worked hard every year to raise funds and put on the annual Gala. As of 2019, the foundation has raised more than $1.4 million for research and to help local Hoosiers with Huntington’s Disease by assisting them with their specific needs for improving their quality of life.
Bev’s children are prohibited from undergoing the genetic testing for Huntington’s Disease until they reach age 18. In the meantime, she continues to fight for her family in the hopes of finding a cure.
“It continues to shock Bev that there is still no cure or drug to slow the progression of the disease,” Coble says.
But that only makes Bev and the foundation more motivated to raise funds for research.
A few of the studies the Foundation has funded include an Oregon Health and Science University research study on RNA repeats in monkey models, an MIT study to research therapeutic test studies in mice, a Scripps Research Institute study on mice to see if a series of compounds can be effective in treating Huntington’s Disease and getting promising studies of GM1 (a type of brain fat found in sheep) to clinical trials.
Beyond research, the Bev Hartig Huntington’s Foundation has provided funds to help improve the quality of life for Huntington’s Disease patients. The foundation has donated to Summerfield Health Center which offers skilled nursing care for those with Huntington’s Disease, and an Indiana University Social Worker who provides support and resources for those diagnosed with HD and their families.
The Gala is the foundation’s main fundraising event, and they need your support. Tickets to the event will go on sale in March. You can choose from seating at VIP tables, Premier tables and reserved seating. You can also make a tax-deductible donation on the foundation’s website.
Funding research is the foundation’s primary mission, but they also want to connect the Huntington’s Disease community.
“If you or someone else you know in the community suffers from Huntington’s Disease, we want to connect with you,” Coble says. “We want to grow the foundation’s board, and we want to provide emotional support and other resources to people within this community.”
Visit bevhartighuntingtonsdisease.com to purchase tickets to the gala, donate and to learn more about Bev’s journey.