Close-up of Young Boy

Luna Partners with Industry, Advocacy, and Families to Accelerate a Cure for Hunter Syndrome

We believe medical studies should be done in a truly collaborative way, where people living with the disease are treated as the experts, and researchers study the information streams that reflect the true lived experiences of the families.

Advocacy organizations—the National MPS Society and Genetic Alliance—partnered with Luna to achieve this goal. In early December, we started enrolling participants in a health information-sharing and medical-discovery digital community that begins in the homes of families living with Hunter syndrome.

As a father of two children with a rare genetic disease, my heart goes out to families living with Hunter syndrome. We are absolutely dedicated to changing the way individuals engage with research—and how research can partner with advocacy organizations.”

Joe Beery
CEO of Luna

This program demonstrates a study framework where all parties are better served while enhancing research goals. This design ensures the clinical and behavioral features and key endpoints are incorporated into the drug discovery process. This can only happen when families—those who live daily with the disease and know the lived experience best—have a seat at the table as partners.

In conjunction with Takeda Pharmaceutical Company, this partnership will advance the understanding of Hunter syndrome and help develop therapeutic interventions for patients with this rare genetic disease.

Participants will share what matters most to them about living with Hunter syndrome. The program provides an opportunity for individuals to engage with a genetic counselor and control the use of their data throughout the study. Access to these data streams, including whole-genome sequencing (WGS), medical history, and patient-generated health data, will form the basis for discovery and development.

Developing a Family-centered Study Design

“We are excited to work with Takeda in exactly our sweet spot. It is we who know these families and their affected children the best. They look to us for support and long-term solutions,” said Terri L. Klein, CNPM, president and CEO of the National MPS Society.

Klein said the organization is happy to be an integral partner in the study, which will engage and support patients with Hunter syndrome and their families throughout the process.

The National MPS Society and Genetic Alliance play a leading role in this program to ensure a family-centered study design–one that is consistent with their needs, wants and lifestyles. The study framework will allow for patients to participate virtually, which reduces the burden on families.

Dawn Barry
president and Co-Founder of Luna

“This allows greater participation from more diverse populations, expedites study recruitment, and amplifies the statistical power for discovery—creating unique benefits for both participants and researchers,” said Sharon Terry, president and CEO of Genetic Alliance. The nonprofit advocacy organization is providing engagement and regulatory expertise for the program. For more than three decades, it has developed and deployed tools that allow families to be in charge of their health to drive research.

Understanding Hunter Syndrome

An inherited disease that occurs almost exclusively in males, Hunter syndrome, also known as Mucopolysaccharidosis type II (MPS II), is a lysosomal storage disorder. It is caused by mutations in the iduronate 2-sulfatase (IDS) gene, which affects every organ of the body.

Conducting WGS will support better understanding Hunter syndrome’s natural history, disease heterogeneity, and the contribution of IDS mutations and genetic modifiers outside of IDS to disease presentation.

More than 600 IDS disease-causing mutations have been implicated in Hunter syndrome. While some mutation types are typically associated with neuronopathic disease and cognitive impairment, single-nucleotide mutations show variable association with other disease manifestations.

Although the age of onset, disease severity, and rate of progression of Hunter syndrome varies significantly, initial symptoms usually become apparent in children from two to four years of age. There is currently no cure for this condition.

“This project exemplifies the interdependency between research and the patients and families who we hope will one day benefit from potential breakthroughs that result from the program,” said Dan Curran, M.D., Head, Rare Genetics & Hematology Therapeutic Area Unit at Takeda. “We have had the privilege of working with the National MPS Society and the global Hunter syndrome community for many years as part of our ongoing commitment to delivering novel therapies, disease education and support resources to those affected by this rare lysosomal storage disorder. We are proud to partner together to create more patient-centered discovery programs.”

To learn how Luna can help your organization bring together individuals, communities and researchers to produce powerful insights, contact us at

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.

LunaPBC Announces Joe Beery as New Chief Executive Officer

New Funding and Leadership Supports Operational and Commercial Scaling

SAN DIEGO, May 18, 2021 /PRNewswire/ — LunaPBC, manager of LunaDNA, a health data platform uniting people, communities, and researchers, has experienced rapid growth in adoption, as the demand from communities, researchers, and regulators for direct accounting and engagement of individual’s health and lived experience increases. The Company announces new executive leadership and funding to scale its platform and services.

The Company is excited to announce that Mr. Joe Beery has been named Chief Executive Officer of LunaPBC, Inc. effective today. Beery joins President and Co-founder, Dawn Barry, to lead the Company. Bob Kain, LunaPBC’s Co-founder who has served as Chief Executive Officer since Company formation in 2017, will remain active with the Company in the role of Executive Chairman of the Board.

“I am grateful to have had the role of CEO in building this Company,” said Bob Kain. “We have created a novel business model that enables our mission to provide a shared platform for patients, communities, and researchers looking for answers to improve clinical outcomes and quality of life. I am excited to move into a new role within the Company and support Joe in his transition to CEO.”

Beery brings industry-leading experience in operational and commercial scaling of innovative information technology systems, having served as the Chief Information Officer for four multibillion-dollar enterprises – America West Airlines, US Airways, Life Technologies, and Thermo Fisher Scientific. As CEO, Beery will draw on his expertise in strategic technology operations, digital and business transformations, cybersecurity, global M&A integrations, and disruptive innovation to grow the Company and scale LunaDNA technology.

“Joe has been a force in the development of scale in many industries, including at the vanguard in digitalization of the life and health sciences industries,” said Dr. Scott Kahn, LunaPBC’s Chief Information and Privacy Officer. “His deep understanding of digital transformation, scientific research, and therapy development make him an ideal choice to guide the growth of Luna as we continue to empower patients as partners in health science and keep them connected with ongoing research over time.”

With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, LunaDNA technology empowers these collectives to gather a wide range of data –  health records, lived-experience, disease history, genomics, and more. LunaDNA technology gives academia and industry everything they need from engagement with study participants to data analysis in compliance with HIPAA, GDPR, and CCPA and across multiple modalities using a common data model. By providing privacy-protected individuals a way to continually engage, LunaDNA technology 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 addition to Joe’s outstanding business experience, he brings a deeply personal and relevant life experience having had twin children born with a rare genetic disorder that was ultimately diagnosed and treated as a result of their family’s extraordinary activism for their kids,” said Dawn Barry, LunaPBC’s President. “Joe is also a champion for diversity and inclusion, drawing from his Hispanic heritage.”

Beery’s appointment coincides with the close of new funding. Key investors in this round include returning investors, ARCH Venture Partners, F-Prime Capital, and Osage University Partners.  John Tishler and Jason Jones of Sheppard Mullin Richter & Hampton LLP acted as legal counsel for LunaPBC in the financing. The funds will be used to accelerate our goal of digitally transforming health research and include expanding the software engineering and marketing teams, increasing community onboarding-to-discovery velocity, augmenting analysis and discovery tools, and enhancing user experience to optimize participant’s ability to share more health data and outcomes thus further enhancing the discovery potential.

“I am honored to be part of this exciting Company and team. Luna is at the forefront of efforts to digitally integrate individuals, communities, industry, and research,” said Joe Beery. “Luna’s platform and services are ready to scale and drive significant value to all of our customers. From both a personal and professional perspective, I see the alignment in both technology and services that Luna provides as key in accelerating the realization of discovery and patient outcomes. We are in a wonderful position to leverage and scale the unique capabilities built by the Company founders.”

About LunaPBC and LunaDNA
Founded in 2017, LunaPBC is a public benefit corporation headquartered in San Diego, California. Our team, investors, and advisors are renowned in the patient-advocacy, health, and science fields. With participation from over 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, LunaDNA technology empowers these collectives to gather a wide range of data – health records, lived experience, disease history, genomics, and more – to advance research that addresses their unique health needs. LunaDNA makes discovery representative of the real world and aligned with people’s true goals by giving all individuals a role in research from right where they are. 

Media Contact:
Genevieve Lopez
LunaPBC, Inc.
Phone: (760) 218-8333

Bob Kain

LunaPBC’s CEO Bob Kain Named to Fast Company’s Annual List of Most Creative People in Business for 2020

We’re proud to announce that our Chief Executive Officer, Bob Kain, has been named to Fast Company’s annual list of the Most Creative People in Business for 2020.

This news comes just months after LunaPBC was named to Fast Company’s annual list of the Most Innovative Companies for 2020 in the Social Good category. Bob is recognized for his incredible achievements and significant impact in health tech, architecting Illumina’s HiSeq sequencing program, starting in 2008, and co-founding LunaDNA in 2017, the world’s first member-owned data-sharing platform for health research.

This year’s winning group features individuals working in artificial intelligence, winemaking, cybersecurity, television, underwater museum design, and more. It includes leaders from Patagonia, Amazon, Kaiser Permanente, Citi, and Google; and it spans across the globe, from China to Peru to Jordan to Burlington, Vermont.

“The Most Creative People in Business list offers a highly vetted, fully reported view of the powerful ideas and diverse leaders already shaping tomorrow,” said Jill Bernstein, Editorial Director at Fast Company.

Bob Kain
Bob Kain, CEO and Co-founder at LunaPBC

Bob Kain and His Creative Endeavors in Health Tech

Biotech executive, inventor, and entrepreneur, Bob is a renowned pioneer in genomics, dedicating most of his career building Illumina, Inc. pre-IPO from 30 employees with no revenue, to a burgeoning workforce of over 3,000 employees and $1.4B in revenue. In 2017, Bob came out of retirement following his 15-year career as the chief engineering officer at Illumina to co-found LunaPBC, the public benefit corporation behind LunaDNA. In between his career at Illumina and LunaPBC, Bob founded health and fitness business, Mesa Rim Climbing and Fitness Center, with multiple sites in San Diego, California, and Reno, Nevada.

“Innovation has always been hailed as a core value in business, and rightfully so. Every business leader will admit this powerful tool supports developing valuable technologies, designing disruptive products, and vastly improving the way products or services are delivered. But what seeds innovation? How might business leaders develop this skill to deliver truly impactful change? It starts with creativity,” Bob shares in his article, Creativity Seeds Innovation.

When applied appropriately, creativity is the secret sauce to improving organizational efficiency, decreasing costs, reducing risks, improving morale, and of course, seeding innovation. It is a crucial asset to an organization often left untapped. Fortunately, we all have the capacity to be creative in solving problems and carrying out work responsibilities.”

LunaDNA’s COVID-19 Study Program

As technology advances, so do creative health innovations, including the recent spike in biotechnology companies aiming to support biomedical research studies at scale. Amid the coronavirus pandemic, Bob believes there’s no better time to seed innovation than now. In March 2020, Bob helped launch LunaDNA’s COVID-19 Study, a program that offers people and communities the tools to share their lived experiences during this unique time, recognizing that each person, community, and geography is uniquely impacted and will likely experience different longterm health effects. LunaPBC is collaborating with various groups to support privacy-protected COVID-19 information sharing including Genetic Alliance and Disease InfoSearch, xCures, San Diego Blood Bank, and the Propionic Acidemia Foundation. Each study has a special focus, ranging from how the virus affects people with cancer, genetic disorders and co-morbidities, to capturing individual’s interest to join research studies.

Co-founders from Left to Right: CFO David Lewis, CEO Bob Kain, President Dawn Barry

LunaPBC focuses on supporting research to identify links between our biology and health, as well as surface other factors related to wellness, such as environmental and social influences. LunaDNA elevates people to partners in research with data privacy, control, and transparency, recognizing that the future of discovery requires big relationships over big data. Bob hopes that LunaDNA will bring data together at scale to fill the missing gaps in today’s databases.

We praise Bob for this incredible recognition and look forward to the additional creative innovations he’ll bring to health tech.

“I would like to thank all of my colleagues at Illumina and at LunaPBC for joining me on these journeys, and Fast Company for honoring me with 2020’s Most Creative People in Business Award. It’s been a fun ride.”

About LunaDNA and LunaPBC
LunaDNA makes discovery representative of the real world and aligned with people’s true goals by giving all individuals a role in research from right where they are. LunaDNA is a digital data-sharing community owned by its members. By sharing health information, you directly power disease research. As a member, your data is confidential. You control the information you share — only one copy of your data exists and you always control its inclusion in LunaDNA. We make it simple for all credible researchers to pursue health and quality of life discovery. LunaDNA is managed by Public Benefit Corporation, LunaPBC, founded in 2017 and headquartered in San Diego, California. The LunaPBC team, investors, and advisors are renowned in the patient-advocacy, health, and science fields, including several former chief executives of Illumina, industry academics, and financial executives.

About Fast Company
Fast Company is the only media brand fully dedicated to the vital intersection of business, innovation, and design, engaging the most influential leaders, companies and thinkers on the future of business. Since 2011, Fast Company has received some of the most prestigious editorial and design accolades, including the American Society of Magazine Editors (ASME) National Magazine Award for “Magazine Of The Year,” Adweek’s Hot List for “Hottest Business Publication,” and six gold medals and 10 silver medals from the Society of Publication Designers. The editor-in-chief is Stephanie Mehta and the publisher is Amanda Smith. Headquartered in New York City,Fast Companyis published by Mansueto Ventures LLC, along with our sister publication Inc., and can be found online at

For more information visit

Freeway overpasses from above

LunaPBC Joins MetroConnect to Accelerate International Growth

On Friday, June 19, 2020, World Trade Center (WTC) San Diego, with San Diego Mayor Kevin Faulconer, Procopio, and JPMorgan Chase & Co., unveiled LunaPBC as one of the 15 companies selected to participate in  MetroConnect V, the fifth iteration of WTC San Diego’s comprehensive international sales accelerator program designed to help local companies jump-start and scale their global growth.

“The LunaDNA platform solves for geographic and inclusiveness barriers that have long plagued cross-border and fully representative data flows by working directly with people, versus institutions, to receive share their health their data for research,” said Dawn Barry, LunaPBC’s president and co-founder. “Disease knows no borders, and our platform doesn’t either. By enabling virtual, dynamic research communities that are controlled by the individuals that share their data, we make it easier for patients and their families to join studies right where they are and share valuable insights from their lived experiences. We’re delighted to access MetroConnect’s resources and experience to amplify Luna’s health equity objectives internationally plans.”

Now in its fifth year, MetroConnect continues to cultivate a pipeline of export-ready firms in San Diego by equipping small and medium-sized enterprises (SMEs) with the necessary resources to grow their international sales. Program participants receive a $5,000 grant, a one-year subscription to premium translation software (courtesy of program sponsor SYSTRAN), discounts on international travel, executive workshops on export-related topics, and access to a global mentor and service provider network. In the program’s four-year history, the 65 graduate companies collectively generated a net increase of $85 million in international sales. These companies also hired 269 San Diego employees during their tenure in the program.

“We applaud LunaPBC for taking the next step in going global,” said Nikia Clarke, executive director of World Trade Center San Diego. “Amidst a global shutdown caused by COVID-19, ongoing trade negotiations with key trading partners, and rapid changes to global supply chains, it is more important now than ever to give local SMEs an edge in the global marketplace by equipping them with valuable resources.”

The MetroConnect program is highly competitive, with just 15 San Diego companies selected based on a variety of criteria, including interest in new markets, interest in targeted metro markets, assessed impact of funds, current international traction, and more. Applicants were assessed by a panel of judges, including representatives from Qualcomm Ventures, Connect, Biocom, the U.S. Commercial Service, CMTC, Viasat, Mitsubishi Electric, Procopio, San Diego State University, Tech San Diego, UC San Diego, San Diego Regional EDC, WTC San Diego, and last year’s grand prize champion, Eddy Pump Corporation. LunaPBC joins a cohort of 14 other companies representing a unique cross-section of San Diego’s industries, from genomics to manufacturing to craft brewing – each with plans to take San Diego innovation global.

The companies in this cohort will also have the opportunity to participate in the program’s final competition, the MetroConnect Grand Prize PitchFest, which will grant an additional $25,000 to help one company further advance its international efforts. MetroConnect is co-underwritten by JPMorgan Chase & Co. and Procopio, with additional support provided by American Airlines, British Airways, City of San Diego, Japan Airlines, Japan External Trade Organization, Mitsubishi Electric, Qualcomm, RSM, San Diego and Imperial SBDC Network, SYSTRAN, Takeda Pharmaceuticals, Taylor Guitars, United Kingdom Government Office, YCP Solidance and more.

About World Trade Center San Diego
World Trade Center San Diego operates as an affiliate of San Diego Regional Economic Development Corporation. WTC San Diego works to further San Diego’s global competitiveness by cultivating a pipeline of export-ready firms, attracting and retaining foreign investment and increasing San Diego’s global profile abroad. Learn more at

Luna is bringing together individuals, communities, and researchers to better understand life. Directly drive health discovery by joining the Tell Us About You study. The more we come together to contribute health data for the greater good, the quicker and more efficient research will scale, and improve the quality of life for us all.  

Click here to get started.

Older man on laptop at home

We’ve Partnered with Genome Medical to Deliver Members Seamless Genetic Expertise

We’re proud to announce our strategic partnership with Genome Medical®, the first and only nationwide telegenomics practice to deliver seamless genetic expertise in clinical care.

LunaDNA members across the United States can access a network of clinical genomic specialists — including medical geneticists, genetic counselors, pharmacists, and primary care doctors — to better understand their health and DNA information.

Genome Medical’s board-certified genetic specialists are equipped to discuss your health risks based on family history, identify the appropriate test for your health questions, and provide guidance on treatment and long-term care for an existing diagnosis. Individuals who have purchased at-home consumer DNA testing kits, like 23andMe and AncestryDNA, may be interested in speaking with a Genome Medical specialist about new or unanswered questions including whether additional genetic testing is appropriate.

“We are always exploring new ways to support health discovery, both for one’s personal well-being as well as more broadly through privacy-protected individual data sharing to advance science,” said Dawn Barry, president and co-founder at LunaPBC. “When individuals have virtual, on-demand access to genetic experts, wellness assessments, and screenings, they can build knowledge for their own health. When they share their health data and insights to advance science, they support the collective health. We are excited to support both.”

This partnership unites LunaPBC and Genome Medical’s shared mission of bringing the power of genetics to health and quality of life, clearly and easily.

How It Works

Step One: Attend a Consultation
A genetic counselor will review a member’s and their family’s health history and determine if genetic testing is right for them. If they already have genetic test results, a genetic counselor can review those results and answer any clinical questions they may have.  

Step Two: Take a Genetic Test
If appropriate, Genome Medical can order a genetic test and help with submitting samples. Results are typically available within one to three weeks.

Step Three: Review Results with a Genetic Counselor
Because genetic test results can be complex, a genetic counselor will help interpret results and guide members on how to apply learnings into daily life. 

Step Four: Integrate What You’ve Learned
Genetic counselors will create a personalized action plan for members to leverage learnings and share with their doctor.

Education Is Power

As genetic information becomes more accessible and available, innovative health systems and hospitals are creating health programs for the communities they serve. These new programs add dimension to medical systems’ understanding of health issues across various populations. 

When LunaDNA members meet with a genetic specialist, participate in genetic testing, and have their unique genetic information on hand, they can collaborate with their doctors on personalized strategies that take into consideration their individual health risks.  

To participate in Genome Medical’s genetic consultation through LunaDNA, become a member at

About Genome Medical
Genome Medical is a national telegenomics technology, services and strategy company bringing genomic medicine to everyday care. Through our nationwide network of genetic specialists and efficient​ Genome Care Delivery™​technology platform, we provide expert virtual genetic care for individuals and their families to improve health and well-being. We also help health care providers and their patients navigate the rapidly expanding field of genetics and utilize test results to understand the risk for disease, accelerate disease diagnosis, make informed treatment decisions and lower the cost of care. We are shepherding in a new era of genomic medicine by creating easy, efficient access to top genetic experts. Genome Medical is headquartered in South San Francisco​. ​To learn more, visit ​and follow ​@GenomeMed.​

About LunaPBC
Public Benefit Corporation, LunaPBC, is a private investor-owned company founded in November 2017. It is chartered to drive societal value through the aggregation and organization of genomic and health data at a scale and diversity rich enough to solve today’s greatest health challenges. LunaPBC founded LunaDNA, the first people-powered, community-owned data sharing platform. The LunaPBC team, investors, and advisors are renowned in the patient-advocacy, health, and science fields, including several former chief executives of Illumina, industry academics, and financial executives. For more information visit and follow ​@LunaDNA_.