Affecting more than 115 million women globally, polycystic ovary syndrome (PCOS) is not considered a rare disorder. However, it’s often underdiagnosed, under-researched, and under-discussed. Diagnosis usually comes after other disorders have been ruled out, a process that often takes two years or more for women.
“One of our key goals is to unite the major PCOS stakeholders in the largest organized effort to address gaps in care and to find a cure for PCOS,” says William Patterson, founding Executive Board member and current Director of Public Affairs at PCOS Challenge.
PCOS Challenge has had a long history of elevating those affected by PCOS as partners in research. “Many investigators miss a huge opportunity by not fully engaging patients as true partners in research and discovery. There is a tendency to design studies with little-to-no meaningful patient involvement and to seek a rubber stamp from patients,” he says.
“We see the frequent misalignment between government, clinical, and patient research priorities which often stem from not listening to patients from the earliest stages of research and its impact on treatment, care, and counseling,” Patterson says. “We see this as an important means of leveraging patient insights, priorities, lived experiences, and skills to fill gaps in the literature, disrupt outdated narratives negatively impacting patient care, and accelerate discovery.”
Many problems exist regarding access to care and quality of care for those with PCOS, stemming from a lack of focus on health policy, underfunding of research, and the type of research being funded, he said.
We see this as an important means of leveraging patient insights, priorities, lived experiences, and skills to fill gaps in the literature, disrupt outdated narratives negatively impacting patient care, and accelerate discovery.
William Patterson
“Historically, the National Institute of Child Health and Human Development (NICHD) funded about 70% of PCOS research. While the NICHD has done tremendous work and contributed greatly to our understanding of PCOS, its mission is largely limited to human development and reproductive health. When you have only one institute funding a majority of PCOS research, it ultimately creates a skew in the literature. In this case, the skew is largely toward the reproductive aspects of PCOS,” he says.
This equates to PCOS being viewed as a reproductive disorder, not a lifelong debilitating condition that comes with other co-morbidities, including mental health, metabolic, cardiovascular, endometrial cancer, liver disease, and other health risks.
“Through our awareness and advocacy efforts, we’ve expanded the conversation around PCOS, so patients and health professionals are more aware of the co-morbidities associated with the disorder and the impact of PCOS on people throughout their lifespan.”
This is why a patient registry is critical, says Patterson.
Propeling discoveries for PCOS research
Two studies have already been launched: thePCOS Challenge Economic Burden Study, which examines the intangible and indirect costs of having PCOS, including quality of life and work productivity, and thePCOS Pregnancy and Maternal Health Study, which aims to identify the gaps in education about pregnancy, and maternal and child health to improve awareness and counseling.
The medical literature suggests women with PCOS are at greater risk of experiencing maternal health complications, like preeclampsia, pregnancy-induced hypertension, and pre-term delivery. These two studies will help provide a clearer estimate of the economic burden and true costs of having PCOS in terms of quality of life and work productivity and help close gaps in awareness, education, and counseling related to pregnancy and maternal and child health risks for those affected by PCOS.
“We see the Luna platform and our patient-powered registry as a means to focus on the questions that patients want to be answered,” Patterson said.
Patient-led research provides mentoring opportunities for investigators
PCOS Challenge is working strategically to reach as many individuals as possible and to empower multiple stakeholders through its patient-powered registry, The PCOS Challenge Study. One of the advantages of the PCOS Challenge partnership with Luna is that it helps the organization achieve one of its goals: getting more early-career scientists involved in PCOS research.
“We see a lack of mentoring and development opportunities for early-stage PCOS investigators,” he says. “In connection with the PCOS registry, we are creating an early-career forum to help these emerging investigators receive mentoring opportunities from senior investigators in the field where we have relationships.”
As an extension of the organization’s mission, the studies also help PCOS Challenge shape the future of medicine by promoting a unified, international research agenda that includes patients and scientists contributing to understanding PCOS and supporting individuals who live with the condition.
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.
Newborn screening (NBS) in the United States has been used for more than 50 years and is often touted as the world’s most successful public health program. Some 99% of the nation’s children are screened at birth for treatable genetic conditions caused in whole or in part by variations in their DNA sequence. Screening has saved infants, and their families, from enormous suffering.
Recently the NBS program has garnered even more attention and interest thanks to the groundbreaking work by Rady Children’s Hospital to leverage genomics more broadly in the screening and treatment of infants. Recently, clinicians have pushed to expand the NBS list of treatable genetic conditions.
The price of genomic testing has continued to come down and innovations in understanding genetic disorders have also been demonstrated to relieve financial pressures on the healthcare sector. In fact, rapid and effective treatment early in life has been shown to be less costly than chronic conditions that would otherwise require ongoing intervention by the health system.
What is newborn screening?
In the United States, small blood samples are collected from every infant shortly after birth and analyzed for treatable genetic disorders. Newborn screening was pioneered in 1963 by Robert Guthrie, MD, for diagnosing phenylketonuria, a genetic disorder that affects metabolism leading to toxicity that damages the brain.
Today, it has become a public health practice in all States to screen newborns for a minimum of 29 treatable disorders to detect inherited genetic disorders. The Advisory Committee for Heritable Disorders in Newborns and Children recommends screening for 61 conditions, 35 of which are conditions that are screened in all 50 states. Over the past decade, the use of low-cost DNA sequencing to diagnose and treat sick children suggests that expanding the Recommended Uniform Screening Panel from 35 treatable conditions to a much more comprehensive set is both possible and affordable for the U.S. healthcare system.
Long-term follow-up is key to ensuring the information learned through DNA sequencing of newborns is appropriately communicated and integrated into clinical care with the family’s pediatrician.
The path to genomic screening in infants
Funding of the sequencing of 100,000 patients in England by the U.K. Department of Health in 2013, Genomics England piloted the use of whole genome sequencing (WGS) in 4,660 children suspected of having rare genetic conditions.1 In parallel, Stephen Kingsmore, MD, and Rady Children’s Institute of Genomics Medicine championed ultra-rapid WGS to diagnose affected newborns within 13 hours.2 These efforts, in conjunction with other programs around the world, established the use case of WGS delivering precision care to pediatric practice and set the stage for use of WGS to screen newborns earlier in life and before symptoms appear.
It is believed there are currently roughly 600 conditions for which early-life intervention will improve the longer-term health of the child. This motivated the National Health Service in the U.K. to begin piloting newborn screening using WGS in 2021. In the U.S., New York is funding the GUARDIAN initiative to offer WGS NBS for 100,000 newborns in the state to screen for 250 conditions and to characterize the diagnostic benefits to the child and the health economic impact on the health system.
Long-term follow-up is key to ensuring the information learned through DNA sequencing of newborns is appropriately communicated and integrated into clinical care with the family’s pediatrician.
Luna, in collaboration with the American College of Medical Genetics, Genetic Alliance, and various medical systems, is engaged in a study to understand the follow-up needs of families and children affected by spinal muscular atrophy and other conditions who receive their diagnosis through NBS. This study uses Luna’s Community Driven Innovation™. This participant-led methodology addresses long-standing problems with traditional research approaches while providing an unbiased, clear understanding of the priorities, values, and challenges of individuals, families, and communities. One of the objectives of this study is to understand the impact of both NBS and long-term follow-up for children impacted by one of the conditions covered with current screening programs and potentially recommend changes in patient care. The NBS study may prove the feasibility of one path to improved care moving forward.
Consider privacy issues with newborn screening research
As new medical approaches are implemented, parents have important decisions to make prior to enrolling their newborn into WGS studies. Consider the risk and benefits involved regarding further use of DNA data after screening for genetic conditions. They should ask how their child’s data will be used in research, by whom, over what period, and for what types of research. Who makes these decisions is a function of the data privacy and protection regulations in various states and countries.
One’s genome uniquely identifies them—and their family—for their entire life, so understanding the impact of early decisions such as these is critical.
As new medical approaches are implemented, parents have important decisions to make prior to enrolling their newborn into WGS studies. Consider the risk and benefits involved regarding further use of DNA data after screening for genetic conditions.
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.
In Duchenne muscular dystrophy research, the six-minute walk test is considered the standard endpoint to determine if a treatment would be successful. Because walking abnormalities are prominent in patients, researchers measure how far a patient can walk in six minutes to determine if a drug holds promise.
Ian Terry, senior user experience researcher
When the COVID-19 pandemic occurred, most children and their families could not travel to research facilities for these six-minute walk tests. Instead, researchers began conducting phone interviews to continue their research and grant funding. They learned that, although specific treatments may not improve walk test distance, individuals were sharing stories of how their legs were getting stronger by walking their dog or standing up and playing catch—endpoints that had nothing to do with how far they walked.
“It took the stress of a complete pandemic shutdown for researchers to begin asking the children and their families, what’s truly important to you?” says Ian Terry, senior user experience researcher at Luna. Terry was instrumental in developing a new methodology based on community-driven versus expert-led research—research driven by what individuals living with the condition determine as a priority.
Community Driven Innovation™, or CDI, is a participant-led methodology that addresses long-standing problems with traditional research approaches while providing an unbiased, clear understanding of a community’s priorities, values, and challenges.
“Community Driven Innovation uses tools to align research around the needs and priorities of a patient group—or any health-focused community with a research question or problem to solve,” says Terry. “The complex science is built-in and “under the hood,” so to speak, making CDI accessible to anyone, no Ph.D. required.”
Often, parents, caregivers, and family members don’t think in medical terms, but by using contextual interviews and other listening approaches, CDI was able to reveal families’ top concerns.
Ian Terry, Luna
CDI has been applied to research championed by patient advocacy groups, including KCNT1 Epilepsy Foundation, The Aicardi Goutières Syndrome Advocacy Association (AGSAA), and Bobby Jones Chiari & Syringomyelia Foundation. Luna has also utilized the methodology as the engagement foundation of the Veterans’ Health Priority and Women’s Health Priority communities.
Kaitlyn Esposito, MPH, who leads programs and research for Bobby Jones Chiari & Syringomyelia Foundation, used CDI to determine their community’s readiness for FDA-approved treatments and clinical trials. “We learned a lot of really interesting things, including just how complex the symptoms are in these conditions. We knew it was complicated but were surprised at how complicated it truly was,” shared Esposito.
“Using CDI, the Aicardi Goutières Syndrome (AGS) community uncovered the importance of muscle tone management as a top priority,” Terry says.“ Often, parents, caregivers, and family members don’t think in medical terms, but by using contextual interviews and other listening approaches, CDI was able to reveal families’ top concerns.”
Historically, the clinicians or researchers would be the one who determines the research question. With CDI, the community can become research partners and advocate, in a data-driven way, for the real challenge or question they need answered.
In rare disease groups, researchers can quickly get funding to focus on a topic that may not already be supported. Those researchers often embark on a project with the most accessible endpoint to demonstrate results. However, that endpoint may not be what’s essential to that rare disease community, as shown with the walk test in the Duchenne muscular dystrophy community.
It’s easy to talk about participant-focused research. It is easy to speak about being patient-centric,” says Terry. “But CDI, for the first time in the health space, gives researchers a tool that marries true participant-focused research with patient engagement in a way that is both scientifically driven and a low burden to affected individuals, their families, and caregivers.”
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.
Growing up in Salinas, California, Ysabel Duron recalls her family was one of the few Mexican families in a small town of 30,000 people. There, she learned the importance of heritage and how culture shapes who we are as individuals. Today, Duron is an award-winning journalist, cancer survivor, and founder of The Latino Cancer Institute in San Jose, California. To help achieve those goals, LCI is working with Luna to host its community on the platform.
Ysabel Duron founded The Latino Cancer Institute after her own cancer diagnosis. The TLCI operates as a “science meets service” framework.
Duron was inspired to establish the organization after a diagnosis of Hodgkin’s lymphoma in 1999. Using her experience as a journalist, she documented her cancer journey in an effort to raise awareness about the disease.
The Institute is a national network of nonprofit cancer service agencies, dedicated to the promotion of education, research, and policy that diminishes the cancer burden in the Latino community. Because of her work, Duron has received the Living Legacy Award from the Chicana/Latina Foundation.
In honor of National Hispanic Heritage Month, Duron shared how her childhood in California and cancer journey inspired her to serve her community by advancing Latina cancer research, education, and advocacy.
Tell us about your work at The Latino Cancer Institute.
The Latino Cancer Institute (TLCI or The Institute) operates from a framework of “science meets service” and proposes to act as a connector, convener, and advocate for patients and stakeholders, who address health disparities throughout the cancer landscape. The goals of TLCI evolved from community-based work where we learn about gaps in services and barriers to care by engaging directly with and in the community, with cancer patients and their families. This direct work has informed much of the initiative, policy, and research in which we engage today.
Tell me about your childhood and how it shaped you as an adult.
I came from the lettuce capital of the world! In Monterey County, California, Salinas was a small town but mighty for its agricultural products. My first memories are those of my mom working in the canneries to cut peaches, broccoli, and other fruits and vegetables while my dad pulled ice for the refrigerated cars that delivered produce around the country.
Our other claim to fame was the Salinas Rodeo. Every July, my brother and sisters entered the Kiddie Caper Parade that marched down Main Street, so we could earn ourselves a ticket to the ensuing carnival and rodeo show. We were one of the few Mexican families. There were two Catholic schools and two Catholic churches, but only one Mexican church where the priest spoke Spanish. There was also one Mexican movie theater, so some of us would regularly accompany our parents, or we’d get dropped off at the English language movie house, where a ticket was a quarter, and a candy bar and popcorn were five cents.
As a high school kid, I was a good student, moving in and out of the various cliques, observing people. I can’t say I was a member of the cool kids clique, but I think my journalistic instincts were already at work, my imagination fed by all the books I read. It was those books at the library that nurtured my ideas of global travel, an interest in other worlds and peoples, a strong curiosity that drove me straight to journalism school out of high school and that continues to drive me in my advocacy work.
I actually don’t think one can separate heritage from one’s natural being; it is culture, values, and traditions. Heritage is a core part of who I am.
Ysabel Duron
Was there a particular person who inspired you growing up?
The concept of a mentor was not a widely known or discussed figure when I was growing up. I would say I had role models who, in bits and pieces, touched my life, but two women stick out.
My high school music teacher Mrs. Solazzi, who I always remembered for telling me, “in trying to hit high C, reach above it, and you’ll land on it.” That became a metaphor for setting high goals for myself, and for even defying my mother–a huge leap for a good Mexican, Catholic school girl–by telling her I alone had the right to decide if I could go to college because I was in charge of my life. And yet, it was my mother who showed me that adversity was not a problem, just a challenge.
My mother demonstrated her ability to overcome challenges when she and a small group of Mexican families came together to raise money and build a new Mexican Catholic Church in Salinas. Salinas was a small but important agricultural town in Monterey County. Through the early 60s, my mother led a small committee to host dances, tamale feeds, and menudo breakfasts after church to raise money.
In those days, there were hardly any big foundation grants available, but there was a large imported community of braceros–Mexican labor bused in from Mexico to toil the fields. My mom said, “braceros built that church,” because it was their attendance at the dances, their stops at the church kitchen for breakfast, and their support of the queen candidates of the Fiestas Patrias (Mexican Independence Day) that provided the resources. Ultimately, they raised over $250,000, a mighty sum in the early 60s! But that church stands today as a testimony to a people’s passion for faith, culture, and language. I never forgot that lesson watching my mom lead that campaign, leaving a legacy that means so much to so many churchgoers, who will never know its history or the people who made it possible. My mom demonstrated to me the power of one, who, with determination and passion can make a difference in the life of a community.
In celebration of National Hispanic Heritage Month, what aspects of your heritage do you think have impacted your work?
I actually don’t think one can separate heritage from one’s natural being; it is culture, values, and traditions. Heritage is a core part of who I am. Though born in the U.S. in small-town America, I was distinctly Mexican, not because of language, but because of all those parts of who I am. I often saw myself as other, apart from the mostly white kids I went to school with. Someone who stood on the sideline observing bound neither in one world or the other, but defined by my olive skin and my own strong heritage, reinforced by parent modeling, Catholic school training, and my own independent spirit. It is in fact that spirit, that independence, that curiosity underpinned by core Latino values of respect (respeto), spirituality, family (familia), and a belief in service to others, that guides my work.
I am a trained journalist. I have worked in TV news for 43 years. I fulfilled that dream but took on an encore career when I was diagnosed with Hodgkin’s lymphoma. My first remark to myself upon hearing the news was, “Ok God, this isn’t about dying. What’s the point?” And my second thought was, “I wonder if I should do a story?” So, I did. During treatment in the spring of 2000, I turned the camera on myself to show my TV audience a cancer journey, the Big C. This fear haunted many communities because, at that time, cancer was shrouded in a lack of awareness and only spoken about behind closed hospital doors or in whispers. Or in the Latino community, not at all. My mantra when I launched my first nonprofit in 2001 was “talking about cancer won’t kill us, the silence will.” And I made it my mission to break that silence, to spotlight the disease, and to help patients and families find support and answers.
It took me many years of public service, as my teams built upon what we learned, addressing gaps in services, collaborating to increase research knowledge about cancer impacts on Latinos, and working to remove systems barriers to quality diagnosis and treatment. It was throughout these 22 years of public service that I realized my heritage, that culture of familia, those values of respeto, and my own spiritually-driven desire to be of value, that inspired my work.
What has been a project you’ve worked on you’ve been especially proud of?
I’ve had the good fortune to collaborate with many Latina researchers over the years. In 2016, I partnered with Laura Fejerman, PhD, who was at UCSF at the time but currently is at UC Davis. I wanted to find a way to teach the Latino community about genetics, a critical growth area of research and medical discovery.
Dr. Fejerman and I decided to focus on hereditary breast cancer and develop a toolkit that provided training for community health workers to educate and raise awareness among low-income, low-literacy, Spanish-speaking, and immigrant women. Breast cancer is the leading cause of cancer incidence and death among Latinas in the U.S. who tend to be diagnosed at later stages and experience worse outcomes.
While disparities such as access, cost, and language barriers exacerbate the problem, just as concerning are the under-researched genetic factors that compound the issue. Lack of awareness and testing contribute to Latina breast cancer health disparities. In 2020, we were ready to launch an education piece when COVID hit. Community health workers were trained online utilizing a toolkit and Tu Historia Cuenta materials, which included a family history document for the participants. The program has resulted in the education of 1,062 women, identified more than 60 women at potential risk for BRCA genetic variants, and close to 500 women who were not up to date with screenings including mammograms, pap, and colorectal tests.
Our project is far from done until we change systems and drive policies that remove barriers to equity and quality care. For now, we are proving that Latinas, especially our most vulnerable population, are open to learning about more complex scientific issues. I am proud of what we have done so far, but I am working for the day that I can put this story to bed with a solution in sight.
What advice would you give young adults who are considering a STEM career?
As a patient advocate on the Board of the California Institute for Regenerative Medicine (the Stem Cell Agency), we are committed to promoting opportunities for youth from high school to graduate school and most particularly for racial and ethnic communities under-represented in the science field. I am proud that we are dedicated to opening doors for students to join prestigious labs through major research universities, academic institutions, and even community colleges to find opportunities in this cutting-edge field.
For young adults interested in STEM careers, start finding classes in your high school that introduce you to the genome and related research. Read! Identify internships and find mentors who can advise you on the best pathway for you to test your interest and find your passion. Don’t let naysayers or fearful parents blur your vision. You could be the one who discovers the cure for cancer, Parkinson’s, or Alzheimer’s, some of our most costly diseases that touch people we love, people we know, and people who could one day be you. Research is a hard journey but an inspiring one. Every step along the way is a learning curve that hopefully will add value to what you do, and will make you feel of value to the world.
What does Hispanic Heritage Month mean to you?
Latinos in this country, who number 62 million people, represent some 22 Latin countries. What most people don’t realize is that 63% are American-born and another 10% are naturalized citizens. The largest group, Mexican Americans, who are over 60% of this diaspora, can track some of their ancestral roots in the U.S. back 500 years, long before the Pilgrims landed at Plymouth Rock. During the Chicano movement of the 70s, some used to say, ‘we didn’t cross the border, the border crossed us!’ Hispanic Heritage Month gives Latinos a chance to tell their narrative which rarely shows up in the history book. It gives us an opportunity to set the record straight about our real story, which will take a lot longer than one month to explore and explain.
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.
When Oscar Garcia was growing up in Tijuana, Mexico, his parents encouraged his interest in computers. Living on the border of Mexico and the United States gave Garcia a unique perspective of experiencing two melding cultures. Today, Garcia is a software engineer at Luna. In honor of National Hispanic Heritage Month, Garcia shared how he was inspired to join the STEM field of computer programming and how his heritage has shaped his career, personal life, and leadership philosophy.
Oscar Garcia developed his love of video games into a career as a software engineer.
What do you do at Luna? I’m a software engineer. I work with the backend team to do everything on the backend of the Luna application. I work primarily with a lot of business logic, but more into why it’s happening behind the scenes. This October will mark one year for me at Luna.
Tell me about how you grew up. I’m from Tijuana, Mexico. I was born and raised in Tijuana and have been living here for the past 27 years. Living on the border gave me the opportunity to get to know San Diego and experience both cultures. I had the unique advantage of seeing both worlds. I was very interested in pop culture and technology, including television, movies and video games.
My parents worked all day. So, as a kid, I spent a lot of time with my grandma. My parents worked hard to provide me with an education, and I was very grateful. I remember my father buying our first computer with Windows XP. That was when I started to get interested in computing. I took a computing lab in school, and my passion for computers just grew from there. Video games were a big factor in my decision to take the software development major since it was the spark that got me interested in how software was made. When I got to high school, I entered the world of programming with very simple console applications. Looking at colleges in Mexico, I looked for software development programs and decided on Cesun University. I graduated as a software engineer in 2017.
What aspects of your Hispanic heritage do you think have impacted your work at Luna? Fellowship. Growing up here on the U.S.–Mexico border, you can see how fellowship is such an important part of the community. It’s one of the core values I’m proud of. At Luna, I want to build a team and work with my team toward a common goal. In this case, it’s building complete software at the highest standards.
What does Hispanic Heritage Month mean to you personally? Hispanic Heritage Month is a representation of what we value as a community; that we are part of a connected group and have an important role to play together. I’m proud of my heritage and where I grew up. For me, these four weeks are a reminder and chance to tell the world that as a group, we can do amazing things. We have done amazing things.
Growing up here on the U.S.–Mexico border, you can see how fellowship is such an important part of the community. It’s one of the core values I’m proud of. At Luna, I want to build a team and work with my team toward a common goal.”
Garcia says his mother is who has inspired him to be a better person and continue despite challenges.
Was there a particular person who inspired you growing up? My mom. She’s the person who always inspired me to be a better person. She taught me to stay humble, and that no matter how hard things get, keep pushing. Those lessons she taught me got me to where I am today as a software developer.
Is there anyone in your field who served as a mentor in your field? I had a professor at university who inspired me to continue to pursue programming. He also kept pushing me to continue to create new goals for myself, to step out of the box, and to approach new jobs or new technologies. Looking back, I can see that I was hesitant or unsure of myself, and he kept pushing me to be more confident and try new things. I admired the knowledge he had of software development, and I looked up to him as someone I wanted to emulate. I strive to be that person who wants to mentor people and share their knowledge with others in the field.
What advice would you give to a young professional in the STEM field? Keep working hard. Keep innovating. Don’t doubt yourself, and don’t be afraid of failing. It’s where you will learn the most. Another important piece of advice is always to keep an open mind—that’s where the greatest ideas come from. When you have an open mind, you start seeing things in different ways.
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.
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