Leading with Love
Joe and Retta Beery Advocate for the Technology that Changed Their Children’s Lives
By Michelle G. McRuiz
Posted November 15, 2015
Joe (BBA ’87) and Retta Beery are in many ways typical parents—they will do anything to help their kids. But when two of their three children started showing signs of a disturbing, mysterious illness, the Beerys had to seek solutions on their own. With the help of individual genome sequencing, their kids are now healthy and active.
The Beerys pose for a family portrait in their backyard in Southern California. Pictured left to right are: Zach, Alexis, Retta, Joe, and Noah holding Eve.
The Beerys didn’t stop there. Compelled to help others find answers too, the couple developed a large network that connects patients and families with scientists and doctors who use genome sequencing to diagnose and treat patients.
Seeking Solutions
Fraternal twins Alexis and Noah were born in 1996. They cried constantly and fell short of normal developmental milestones. At 20 months, they were diagnosed with cerebral palsy. However, they never improved with treatment, especially Alexis. At age 5, she still had trouble sitting up, walking and swallowing. Noah shared some of her symptoms and also vomited daily. The twins’ doctors had no answers.
Frustrated but determined, Retta began doing intense research. In 2002 she learned about dopa-responsive dystonia (DRD), or Segawa’s dystonia, an obscure genetic condition that causes dopamine deficiency. DRD resembles cerebral palsy. Retta took the twins to a specialist, who gave them a drug called L-dopa. Their symptoms receded dramatically, and they made remarkable progress. Doctors decided the twins didn’t have cerebral palsy after all, but rather DRD.
Retta looked for ways to share this treatment with others. “From the time I found that article on DRD, I’ve connected with a lot of media outlets,” she said. “I started a website in 2003. I shared information and connected people with doctors.”
Meanwhile, Joe, chief information officer at U.S. Airways in Phoenix, received a recruitment call from Life Technologies, a California biotech company that makes DNA sequencing machines. The offer was aligned perfectly with Joe’s skills and Retta’s advocacy, so he accepted it. The move also gave the Beerys the answer they had been seeking.
Final Piece of the Puzzle
In 2009, the 13-year-old twins started having other alarming medical problems. It became apparent that something else was wrong. Joe and Retta decided to have genome sequencing done on themselves, their three children, and their parents, through a project at Baylor College of Medicine in Houston. Three months later, Baylor called the Beerys and said, “We found something.”
Alexis and Noah inherited one mutation from Retta and one mutation from Joe, getting two “hits” in one gene. Those two hits created a dopamine deficiency which was already being treated with L-dopa, and caused a serotonin deficiency, which was not being treated. In response, the twins’ neurologist prescribed an amino acid that converts to serotonin in the brain. The twins once again made huge improvements. The Beerys had found the final piece of the puzzle.
Can One Family Change the World?
Armed with new knowledge, Joe and Retta increased their outreach to educate doctors and patients. And because Alexis and Noah were two of this technology’s early successes, the Beerys had ample opportunity to speak at medical conferences, at the National Institutes of Health, and even in Congress.
“If you model what we went through,” said Joe, “the expectation is to help people duplicate that capability through the understanding of newer technology, but also to help people understand it and be advocates for it. That’s how we’re trying to change the world.”
The Beerys also started a foundation, Hope Knows No Boundaries (www.hopeknowsnoboundaries.org), to build upon Retta’s advocacy work. “I’ve gone to appointments with patients so I can explain to their neurologists why [genome sequencing] is a good thing,” she said. “This tool is not going to solve all problems, but it is solving a high percentage of these undiagnosed cases.”
With Alexis and Noah preparing to attend out-of-state colleges this fall, Retta and Joe are focusing on linking patients to laboratories that do genome sequencing, and helping those patients find funding for the testing, if necessary. The results then go to the patient’s physician to review with the patient.
“Our nonprofit connects the dots between the patient, the medical team, and the insurance,” said Retta.
Ethical Challenges
Genome sequencing is a complex technology, and skeptics have challenged the Beerys. “I understand there are a lot of ethical questions,” said Retta. “But what this technology can be used for—I think it’s criminal to not use it.”
“It has to be well-managed,” added Joe. “The question is, ‘How can we do this?’ not ‘Why can’t we?’ It’s hard to debate the results in our case.”
Throughout their ordeal, the Beerys were sustained and even brought closer by their strong faith. “It was never really bad because we knew there was a purpose,” said Retta. “We do whatever we can to solve problems; we’ve always been that way.”
