Smith, former Twins reliever, LaForce work to eliminate Huntington’s disease, one family at a time
Couple’s foundation is helping families have children without passing on the fatal disease
Joe Smith saw what Huntington’s disease took from his mother, Lee — her memory, her motor skills and eventually, far too soon, her life. It took the same from his grandmother. There’s a 50 percent chance Smith inherits Huntington’s disease, a rare neurodegenerative disorder with no cure.
But that’s where it ends.
The former Minnesota Twins reliever and his wife, TNT sideline reporter Allie LaForce, are expecting a baby boy, their first child, in November. Whether or not Smith is a carrier of the gene or not, their son will not be.
“She said before she passed away, ‘Promise that your kids won’t have it,’ ” LaForce said of Lee, who died in 2020. “We said, ‘Yes.’ And she lit up. She was losing her ability to really do a lot of her facial expressions, but her eyes lit up so bright and she had a big smile on her face.”
Using pre-implantation genetic testing (PGT), which screens embryos created during the in vitro fertilization (IVF) process, they were able to ensure that. After a first-trimester miscarriage last year, LaForce is now more than halfway through a healthy pregnancy.
And while Smith and LaForce have been on their own IVF journey to parenthood, they also have been helping other couples undergo the same process to conceive HD-free children through their foundation, HelpCureHD. As of late July, 17 couples had welcomed a healthy baby, eliminating HD from their family line, and almost 100 families had received grants to go through the process, which usually costs upwards of $30,000.
The couple raised nearly half a million dollars at their first HelpCureHD gala last year in Houston, where Smith formerly played. LaForce said before their second annual gala, scheduled for Thursday night at Minute Maid Park, that they were hoping double that.
“I don’t want anybody to suffer through this. The whole family. I don’t want anybody to watch their mom go through it,” said Smith, a 15-year big league veteran designated for assignment by the Twins on Aug. 3. “… It’s so much, and you know the outcome. You know what’s coming and so do they. It’s just disgusting. I just want it gone.”
STARTING THE FOUNDATION
Smith and LaForce, both Ohio natives, were on a tour of the Cleveland Clinic during the off season in between the 2017 and 2018 seasons when they learned all about PGT. They also learned about the cost, which is often prohibitive for families.
Because of that, Smith said, sometimes the choice isn’t even presented.
“In America, people literally come here for all the choices that we’re supposed to have, so if there’s choices that are being hidden from you that could take a disgusting disease out of your family line, we didn’t feel like that was fair,” he said.
Immediately, they knew how they wanted to direct their efforts, starting HelpCureHD shortly after.
While they were fortunate to have the financial means to go through the process themselves, they wanted to bridge the gap for HD families who weren’t quite as fortunate.
“Research, at the end of the day, is what’s going to cure this thing but, I mean, that’s hundreds of millions of dollars over long periods of time,” Smith said. “ … We wanted to make that impact and help families and we just said, ‘If we can help 1, 10, 100, whatever it is, let’s go do it.’ ”
In the beginning, that meant LaForce was often cold calling clinics to start developing relationships. Now, they have fertility clinics across the country that they partner with — and are searching for more — in nearly every state and have recently expanded into Canada.
While the COVID-19 pandemic postponed many non-emergency procedures, which slowed things down for grant families, everything is back in full swing and Smith said HelpCureHD has more than 20 couples expecting right now.
On the short end, they’ve had families go through everything — pre-cycle screenings, IVF, genetic testing, pregnancy and birth — in a year. While it often takes longer, they understand the urgency these families are feeling with at least one parent either having been diagnosed or staring down a potential HD diagnosis in the future.
“These families are desperate to get going because if the parents have Huntington’s disease, you’re up against time,” LaForce said.
A fortuitous scroll through Instagram one day changed Margaret and Kyle Schultz’s lives forever.
Margaret, whose mother passed from HD two years ago, knew she did not want to have biological children unless she got tested for the gene. But like Smith, she didn’t want to get tested for fear of how she would emotionally react. The couple, who live in South Carolina, visited a fertility clinic sometime around 2017-2018, and were told of the high cost of IVF.
“It was something that we could not afford,” Margaret Schultz said. “It was very disheartening. It was heartbreaking.”
A year later, when they were planning a charity drag queen bingo event, Margaret was scrolling through the popular social media app, clicking through Huntington’s disease-related hashtags.
Lost in Instagram, she stumbled into LaForce’s account and learned about the life-changing grant. By September 2019, they had been approved. While the pandemic and a medical records issue slowed things down slightly, their healthy baby boy, Lewis William — whom they call Liam — was born on Oct. 19, 2021.
The couple has two more embryos — a boy and a girl — that they hope to transfer in the future. But right now, they’re soaking up every moment with a baby boy they thought they might never have.
“Watching everything my mom went through, I could never know that I did that to someone else. If I had any part of not allowing that to continue, then I had to do everything I could,” Schultz said. “It wasn’t an option to allow it to happen again. The fact that he’s here and he’s never going to have Huntington’s disease is just like, unreal to me. I pinch myself every day.”
Matt and Morgan Gothard, of Huntsville, Ala., also found HelpCureHd on social media. When they applied for a grant in 2019, Matt said they didn’t think they would get it. Morgan’s dad has Huntington’s disease and the couple had a story similar to the Schultzes’ — they had not planned on having biological children without going through IVF, which was too expensive.
Though the process was long — they went through two egg retrievals after the first round yielded one embryo — and then suffered a miscarriage at the end of 2020, they welcomed their baby girl, Adalynn, this January.
“Now that she’s here, we can’t imagine life without her,” Matt Gothard said. “We’re just trying to soak it all in. She’s the first grandchild on either side, so she’s definitely getting all the love.”
Talking to families and listening to their stories has been especially touching for Smith and LaForce. What makes this even sweeter for the couple is that after their own long journey — which they have candidly shared on social media and on their foundation’s blog — they’ll soon have their own baby.
Everything has progressed well to this point, and the couple believe they have been seeing positive signs from the beginning of the pregnancy. This March during a break from covering March Madness, LaForce traveled to Fort Myers, Fla., where the Twins have spring training for so the couple could attend an ultrasound together.
Their appointment was at Lee County Health and the name Lee, Smith’s mother’s name, was plastered everywhere. At that fateful appointment, a heartbeat was detected.
Come November, the couple expects a Huntington’s disease-free baby, fulfilling the promise they made to Lee.
“I definitely cried at our first ultrasound when we heard the heartbeat,” LaForce said. “… It did feel like this is right this time and that she was definitely sending some help down from heaven, that’s for sure.”
This story was written by one of our partner news agencies. Forum Communications Company uses content from agencies such as Reuters, Kaiser Health News, Tribune News Service and others to provide a wider range of news to our readers. Learn more about the news services FCC uses here.