Beery family

Rare Disease Day: Transforming my Personal Experience into Technology

Ever since Rare Disease Day was established in 2008, I’ve viewed it from two lenses: as a parent to two young children with a rare condition and as a professional whose career has been focused on the technology to help people live healthy lives.

I became a member of the rare disease community when my twins, Noah and Alexis, were born. We didn’t know it at the time, but they had a genetic condition that caused a life-threatening deficiency in their dopamine and serotonin levels.

Rare diseases are often misdiagnosed

When the twins began to have severe and debilitating muscle spasms, they were ultimately diagnosed with cerebral palsy at age 2. Unfortunately, as many in the rare disease community have experienced, misdiagnosis is common.

After four years of research, my wife, Retta, who was not convinced with the diagnosis, read medical journals, articles, talked to researchers and met with doctors, eventually discovering our twins’ diagnosis of dopa-responsive dystonia, which can cause muscle contractions, tremors and uncontrolled movements.

Noah, Alexis, and Zach Beery
Noah, Alexis, and Zach Beery

After a confirmatory diagnosis and prescription, the twins rebounded and began to thrive. They went from a life of wheelchairs and feeding tubes to dance, gymnastics, and every sport they always dreamed of playing.

It took five years to correctly diagnose them with dopa-responsive dystonia, and another 10 before whole-genome testing would reveal the mutation that caused the serotonin deficiency—and how to treat it.

Since that time our ability to diagnose, treat, and provide quality-of-life benefits to people with rare diseases has increased exponentially. The diagnostic journey we experienced with Noah and Alexis took 15 years. That journey today would be, in some aspect, days or even hours.

Accelerating progress for people with rare diseases

Our ability now to look at clinical data, genomics, and ultimately proteomics, allows us to bring more facts to the table—and not just for Alexis and Noah.

After the twins were diagnosed, we worried that Zach, our oldest son, may also have the disease, especially since it can manifest at any age. Any time Zach got sick, we didn’t know if it was something as benign as allergies or if it was the initial symptoms of dopa-responsive dystonia.

Genetic testing gave us clarity to know what was causing the twins’ symptoms and how to treat them, but it also confirmed that Zach didn’t have the genetic markers.

Today’s genomics technology can show you a life-threatening genetic mutation hidden in your DNA, but it also can show you that it’s not there at all—and that can be just as valuable.

With genomics, the likelihood of living with a misdiagnosis lowers exponentially. The speed and accuracy of today’s technology are changing the world for those in the rare disease community and beyond.

How Luna empowers the rare disease community

My work at Luna is personal because I’ve seen the power of communities connected by, through, and for research, with amazing results. These results simply would not have happened in a traditional engagement with the healthcare system. The Luna platform empowers communities to digitally mobilize, gather their health data, develop solutions to their questions, and partner with industry and researchers to find answers.

We are proving that there is a way to simultaneously create connections among individuals in a group and across groups, industry leaders, and scientists to help solve health challenges. It’s a win-win-win.

We’re working together to help improve the human condition.

Our twins are now 25 years old. They are thriving in ways we didn’t think possible for the first decade of their lives. Looking back, we didn’t even know if they would survive this long.

Rare Disease Day continues to be a celebration for our family, not just on the day, but every day. I continue to be encouraged by the progress made in the rare disease community, by the connectedness, support, and also the partnerships between patients and researchers.


About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data—health records, lived experience, disease history, genomics, and more—for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.


Joe Beery

Joe Beery

CHIEF EXECUTIVE OFFICER

Joe is a transformational executive with deep experience leading strategic technology operations, digital transformations, and disruptive innovation across industries. His twin children were born with a rare genetic disorder that was undiagnosable until they underwent next-gen sequencing. Since this life-saving breakthrough, Joe is dedicated to helping advance the use of genomics to give families of children with rare diseases answers and opportunities for treatment.


Celebrating Joe Beery, National Hispanic Heritage Month 2021


His father had been a talented self-taught engineer who was a machinist building aircraft engines at General Electric. All the while, their family wasn’t detached from practicality. In addition to his job as a machinist, Joe and his father repaired cars, bakery equipment, and meat processing equipment. They lived in New Mexico and spent summers on the farm in Colorado. Joe reflects often on that childhood of necessity, the fixes, and curious tinkering, as his backbone for facing down challenges and overcoming problems through well-thought solutions. 

Joe Beery, CEO at Luna

In college, Joe studied business computer systems and programming at the University of New Mexico, where he advanced his interests in systems integration and software performance optimization, which channeled his talents from farm fields and on to fields in technology.  

This concoction of tech-savvy problem solving led to Joe’s early rise from manufacturing to software development for Motorola, before leading the Company’s semiconductor products division Computer Integrated Manufacturing (CIM) teams. From there, he shifted to the tech aspects of the airline industry, serving as Chief Information Officer for America West Airlines and then US Airways over a 10-year period.  

Amid these successes, Joe and his wife Retta faced tenuous adversity in 1996, realizing their newborn twins — Noah and Alexis — suffered from persistent tremors, seizures, and a mysteriously debilitating loss of body control. Doctors, unable to trace back to the cause, initially diagnosed Noah and Alexis with cerebral palsy.  

The exhibited symptoms, though, didn’t fit this diagnosis, as Joe and Retta continued to see their children spiral in dissipation. Desperate but determined, Joe and Retta retooled. Equipped with an outlook for facing down challenges and solving complex problems, Retta poured herself into research, sought research studies for Noah and Alexis to participate in. Ceaselessly, for years on end, until they landed on solutions.

Technology, problem-solving, and perseverance coalesced in 2008 when Joe took his career into biotechnology, at Invitrogen, the biotech company that became Life Technologies and was later acquired by Thermo Fisher Scientific.  

Their family now existed in the realm of science and solutions, and Retta sought to have Noah and Alexis’s DNA samples sent to Baylor College of Medicine for sequencing analysis. There, answers began coming back. Noah and Alexis had genetic mutations affecting the synthesis of dopamine and serotonin, far afield from initial diagnoses of cerebral palsy. Doctors accordingly modified their treatment to include adding the serotonin precursor 5-hydroxytryptophan (5-HTP) to their treatment. Noah and Alexis quickly rebounded and thrived.   

The perseverance of parents unafraid to face down problems, teamed with evolving opportunities in health discovery and advancing technology, helped Joe and his family to live strong, healthy lives.  

Now, as Luna’s Chief Executive Officer, Joe is scaling its platform to further unite people, communities, and researchers to accelerate health discoveries. “It took 15 years to get a definitive diagnosis to treat their rare genetic disorder, “Joe said. “Today with Luna, we would have found that in 15 months.”  

In honor of Hispanic Heritage Month, Joe shares more with us about his life and career journey, and how he became a prominent health tech executive spearheading health initiatives for the greater good.  

Hi, Joe.  Thanks for taking the time to  share more about your life and career journey.  Can you share more about your life growing up as young Joe?   

My mom’s maiden name is Velasquez. She grew up in southern Colorado and did not speak English until she went into high school. My dad grew up in Elkhart, Indiana. They met when he was stationed at the Army base in Colorado Springs. I was the first grandchild within both families and blessed to have both cultures influence my life growing up. I spent my summers on the farm with the Velasquez family, which included my grandparents, uncles, aunts, and cousins. The winters were spent in Albuquerque, New Mexico while I was in school. I was fully emerged in the Hispanic culture. 

Diversity is not about your looks or your ability to speak a language but how you think and your life experiences.”

When did your interest in tech start? What inspired you to eventually take this career path?  

My father did not go to college. In fact, I got my high school diploma before he did. Despite that, he is one of the most gifted engineers I have ever met. He eventually worked for most of his career at GE building aircraft engines. From a very early age, I learned to repair equipment and was interested in how machines work. We did many side jobs together. When I went to college, I was driven to be an industrial engineer. In my early days at the University of New Mexico, I found that I was more interested in the computer side of the engineering discipline. I would write programs for my fellow students, and they would do my calculus homework. This was the point in time that I realized that I was going to pursue a career in information technology.   

How has your heritage shaped your career today? What aspects of your heritage do you think have impacted the culture of your workplace?    

Overall, I think that my heritage has shaped me in two very specific ways. The first is my work ethic. Coming from a mixed family and from a minority group, I learned the value of working hard, working long hours, and going above and beyond to earn what you make.  The second is my perspective on diversity and what it means. I do not have the features or the last name, but I am at my core Hispanic. This makes for very interesting conversations in the workplace when someone finds out I am Hispanic and then asks if I speak Spanish. Diversity is not about your looks or your ability to speak a language but how you think and your life experiences.  

Well said.  Let’s talk more about your role as CEO of  Luna. What excites you most about your leadership role at Luna, personally and professionally?     

Luna is a super exciting company. We have all the elements that make for life-changing moments for individuals and researchers who use Luna, investors, and employees. We have a great product, incredible team members, and most importantly, we change the quality of life of people. I have had a wonderful career for over 30 years, and I want my legacy to be about what we do at Luna.   

Inclusion is recognizing the value of everyone’s lived experience and creating an environment that not just respects that but leverages that for the good of the individual and the team. ”

What do diversity and inclusion mean to you? 

 Diversity to me is about lived experiences and what lens an individual can use to solve a problem. It is connected to all aspects of an individual.  Inclusion is recognizing the value of everyone’s lived experience and creating an environment that not just respects that but leverages that for the good of the individual and the team. 

What one piece of advice would you give to others passionate about becoming leaders in technology? 

Technology is one of the most available careers. We can work and grow in technology regardless of where we live, how much education we have, and what our desire is to do. My advice is to use all these aspects to focus on the element that excites you and to use your heritage as a motivator and lever to expand in the field.   

Finally, what would you like your legacy to be?     

I want my legacy to be a combination of three things. First, is my faith and family. My greatest accomplishment is my relationship with my wife and my children.  Second, is my ability to be humble but courageous and always put the customer, employees, and the company first. Finally, I want to be known for working for companies and producing products that impacted people’s lives. 


About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data—health records, lived experience, disease history, genomics, and more—for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.