UTHealth and Astros lead charge against Huntington’s disease and help patients have a ball
21-Sep-2018 4:05 PM EDT
Newswise — HOUSTON – (Sept. 21, 2018) – Living with Huntington’s disease can often feel like an endless battle, but patients and their families had the time of their lives watching the Houston Astros in action at Minute Maid Park.
Nearly 100 Houstonians affected by the devastating disease scored tickets to the game on Saturday, Sept. 15, thanks to the generosity of Astros pitcher Joe Smith, whose own mother is fighting the deadly neurodegenerative disorder. The condition, inherited within families, progressively robs people of their physical and mental faculties. It affects approximately 30,000 people in the United States with more than 200,000 others at risk.
Erin Furr-Stimming, M.D., associate professor of neurology at McGovern Medical School at The University of Texas Health Science Center (UTHealth), was there to support the local Huntington’s disease (HD) community and cheer on players. Furr-Stimming heads the UTHealth Huntington’s Disease program, the only Huntington’s Disease Society of America Center of Excellence in Texas.
Furr-Stimming’s team includes more than a dozen researchers, two physical therapists, a social worker, a genetic counselor, a psychiatrist, a neuropsychologist and a dietitian who help patients navigate the disease and advance clinical breakthroughs in mitigating its impact.
“It takes a village and we’re in this for the long haul. Every day I’m inspired by my patients and their families, who show amazing courage and fortitude, striving to stay strong and never losing hope,” Furr-Stimming said. “Joe and his wife Allie, together with the Astros Foundation, have been so kind and they have given everyone such a magical experience. It lifted everyone’s spirits and was a dream come true, especially for the children. The Astros won the game and we’re determined to tackle and ultimately beat Huntington’s disease together.”
Pulling out all the stops to make it an extra special day, Smith and wife Allie LaForce, a TV sports reporter, took the time to meet patients and their families before the game. Eager baseball fans also enjoyed a behind-the-scenes tour of the stadium, including visiting the press room and walking through the VIP tunnel. Courtesy of the Astros Foundation, they were presented with giveaways and T-shirts emblazoned with the slogan “Strike Out HD,” and jumped at the chance to have their pictures taken with Smith. Children of all ages were among the lucky ticket holders who were thrilled to have their memorabilia signed by one of their biggest sports heroes.
Opening his heart to the audience, Smith took part in a Q&A session and spoke candidly about his mother’s illness.
“We’re all in this together. I’m passionate about helping anyone affected by Huntington’s because I know how cruel the disease can be for both patients and their families,” Smith said. “Watching my mom suffer is the hardest part. But she wants me to keep playing and doing what I love. I want to be there for her, but she wants me to live my life. We really hope everyone had an awesome time at the game and got to forget about the daily struggles for even just a few hours.”
Since joining the Astros for the 2018 season, Smith has embraced the local Huntington’s Disease community. In June he spoke at a local family education day, backed by the Huntington’s Disease Society of America, and last month LaForce attended a bingo event aimed at giving people an opportunity to relax, socialize and share coping tips.
The couple established a foundation, Help Cure HD, to help people eliminate the gene from their family line. It's possible for confirmed carriers of the mutated Huntington’s disease gene and those at-risk to undergo preimplantation genetic testing before pursuing IVF, providing a way to make sure their offspring do not inherit the mutated HD gene.
“Huntington’s disease is hugely challenging, but we’ve got to keep raising awareness and stick together,” Smith said. “The Houston HD community is one of the most supportive and encouraging I’ve gotten to be part of. We are so thankful to have the incredible support from Dr. Furr-Stimming and her co-workers and experts at UTHealth.”