Ellis’ Story Hero Image
Discovery

A Mother-Daughter Mission To Find a Cure

by Luna

Ellis Rose Quesada is a 9-year-old girl who can captivate a room full of strangers. But her spontaneous performances and spunky dance moves aren’t the only features that make this little girl unique.

Ellis is living with Cystic Fibrosis (CF), an inherited life-threatening condition with an average life expectancy of 37 years old. Today, Ellis and her mother are taking proactive measures to change the narrative of the disease and actively participate in research to accelerate a cure.

When Ellis was born, her mother Kristina had no idea her daughter would be sick. It wasn’t until her doctor discovered that Ellis was among the few to be born with CF that she realized life wouldn’t be ordinary.

In addition to living with excruciating daily symptoms including nasal congestion, sinus problems, wheezing, and breathing issues, Ellis was required to take enzyme pills after every time she ate food, including small snacks. Despite the uncertainty of the future, Ellis and her family remained optimistic.

She knows how to use that confidence and that power in who she is to elevate others around her. I think a lot of that comes from being very upfront early on about her illness and what it is that she’s dealing with.”

When Ellis was three years old, she was accepted into a CF clinical trial. “It takes so long to get these drugs to market. It feels like you’re moving in slow motion,” says Kristina. But over time, they began to see the benefits of participating in the study.

As Ellis continued to take the drug, she began showing signs of progress. She slowly started to gain healthy weight and her energy levels went up. Tests revealed that her pancreatic sufficiency went from insufficient to sufficient.

Today, Ellis no longer has to take enzymes with her food and is excited be able to enjoy the fun foods children love, like ice cream and candy bars. It’s progress like this that’s ignited a passion and drive in Ellis to help further find more treatments for herself and others living with CF.

Kristina is hopeful that critical new drugs will come to market sooner and believes LunaDNA has the power to accelerate discovery when patients and the research community work more closely together.

“Most of us think that we can walk into a drug store and get exactly what we need.” says Sharon Terry, health advocate and President and CEO of Genetic Alliance.

“It’s really hard to bring a treatment to market. LunaDNA is doing a very simple thing: it’s offering me a place to put my data and, at the same time, allows scientists to aggregate the data they need for discovery. So I retain the control of it and I’m freely participating in research but not worrying about being identified or that I’ll lose my privacy. Bringing all these data together in one place, we start to be able to make discoveries very fast.”

Kristina knew that early intervention would accelerate a treatment for Ellis and open up new possibilities for science to find a cure. “Her case is the first of its kind where they are seeing symptoms being reversed. There’s still new drugs coming to market today that we’re going to want her to have access to. If there’s going to be a better way with something like LunaDNA then I think that’s going to be huge for all patients to accelerate getting the drugs that they need in their hands.”

Luna is bringing together individuals, communities, and researchers to better understand life. 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.

Directly drive health discovery by joining the Tell Us About You study. 

GET STARTED

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.

Kirby Bloom, Chief Technology Officer
Discovery

LunaPBC Announces Kirby Bloom as CTO

by Luna

LunaPBC™ has proudly promoted their chief architect to spearhead the technical and data science initiatives at the world’s first people-powered research platform, LunaDNA™ — incoming chief technology officer Kirby Bloom.

Kirby has been an integral part of the strategy, design, and development of LunaDNA’s platform, having worked at the parent public benefit company, LunaPBC, since April 2018. With over 20 years of experience developing scalable, distributed cloud architectures, Kirby is bridging the gap between research scientists and large-scale data analytics by building the systems needed to discover more insights for health and quality of life improvement.

Kirby served as the Head of Software for Applied Genomics at international biotechnology company, Illumina, Inc. After 11 years creating software architecture for Illumina’s DNA testing platforms serving the forensics, transplant diagnostics, microbiology, and consumer markets, Kirby joined former Illumina executives Dawn Barry, Bob Kain, and Scott Kahn, to create LunaDNA, the world’s first participant-owned, SEC-qualified health data sharing platform for accelerating medical breakthroughs.

As CTO, Kirby leads the technology vision and implementation for LunaDNA by driving strategy, designing innovative product roadmaps, and overseeing technology and engineering team execution.

My entire career has been devoted to making ‘the complex’ simple in order to improve lives,” says Kirby Bloom. “I feel honored and just flat-out lucky to have the opportunity to be a part of a purpose-driven team that is building a platform that truly enables personal control on one end and insights to drive health research on the other.”

LunaDNA’s technical team includes former employees of Netflix, Kaiser Permanente, and Human Longevity, Inc. with skills that range from software engineering to machine learning to platform strategy and human-centered design.

Kirby has so many strengths but one that always stands out to me is his perspective.  He sees the bigger picture, naturally adjusts for all that is dynamic, and doesn’t get lost in the details”, said Dawn Barry, President and Co-founder of LunaPBC.  “For example, while many companies are scrambling to increase their consumer data privacy protections, Kirby architected LunaDNA with privacy by design because it’s what discovery needs and because protecting people is the just right thing to do. Kirby has tremendous respect from everyone on his team and knows how each individual works to contribute to the overall platform goals. By keeping the end objective in sight, Kirby leads to the vision, not just the short-term goals”.

Kirby Bloom holds a Master of Information and Data Science from the University of California, Berkeley, one of the nation’s top multidisciplinary programs that prepares professionals with the latest tools and analytical methods to work with data at scale, derive insights from complex and unstructured data, and solve real-world problems. Kirby also holds a Bachelor of Business Administration degree in Management Information Systems from Texas Tech University. When Kirby’s not leading LunaDNA’s technology team, you can find Kirby beneath his headphones at a local coffee shop or traveling the world with his fiancée. Connect with Kirby online at @krbloom22 and kbloom@lunadna.com.

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.

A man's hands typing on a laptop keyboard
Discovery

Health Data Privacy: Why Eroding Public Trust Harms Medical Research

by Luna

Using Data Privacy to Empower Health Research

The importance of data security and data privacy policies have recently come under scrutiny due to revelations around Google’s Project Nightingale. The initiative with Ascension, the nation’s largest nonprofit health system, granted Google access to medical records of more than 50 million individuals in 21 states and may hinder the trajectory of health discovery by eroding “consumer” trust. 

While historically it might have been a safe harbor to stay within the letter of the law, consumer sentiment around health data privacy, control, and opportunity has shifted dramatically in the last year. The biggest challenge affecting the sharing of individual data is the establishment of trust between the individual and the researcher. Mistrust has developed as a result of the unethical and/or unconsented use of data for research purposes – like the cases of HeLa cell line creation, and the Tuskegee and Havasupai studies – and are reinforced by more recent examples –  like the study to find a gay gene and the study of extreme inheritance using the UK BioBank.  Innovations in genomics and AI benefit the population and fuel the changing needs of discovery, however, when trust and transparency are compromised, health discovery can be harmed. 

Re-establishing trust amongst individuals contributing data for research must be addressed directly through various efforts, including:

  1. The transparency of data handling and data usage,
  2. A measure of reciprocity in the value achieved via data usage, and
  3. The ability of the individual data contributor to exert control over the use of their data throughout the research process.

Ideally, these elements contributing to the re-establishment of trust are implemented through adequate technologies, contractual arrangements with research participants, and a regulatory oversight environment that enforces accountability on the part of the data manager. 

Switching the model of control from institutions to individuals offers a solution that can empower health research that is more representative of the population(s) in need of improved and more cost-effective healthcare.  

Benefits of Establishing Trust in Research

Researchers can establish trust via the secure, seamless contribution from participants that have otherwise been grossly under-represented in medical research. For example, a recent study from the National Cancer Institute Center to Reduce Cancer Health Disparities found only one-tenth of their biorepositories specimens are from non-white patients. Despite this lack of wide-spread ethnic representation, there are several studies that signal the benefits of research including understudied populations that include the revelation of new insights on disease and therapy response. Moreover, not all of the global population is of European descent, which suggests potential benefits of expanded diversity as the field of precision medicine evolves to address the growing needs in healthcare that can benefit all people.

Additionally, a health data platform that implements privacy policies, enables individual control and prioritizes trust inverts the research paradigm, transforming the individual data contributor from research subject into a research partner. This new person-centered paradigm holds the promise of a valued community engagement that fuels richness and depth of information that is longitudinal and provides researchers the information needed to unlock discoveries necessary to prevent the onset of disease and even intervene unavoidable disease earlier. 

Preventing Misuse of Data in Research

Fortunately, the technical requirements of transparency, reciprocity, control, and privacy can be supported by modern infrastructures that have moved into the mainstream of information technology. Cloud platforms provide a level of security that can be coupled to a set of privacy policies that fully support data privacy control by individuals. Furthermore, the coupling of an immutable corporate charter to focus on data uses that directly contribute to societal benefit via health and medical research ensures that data misuse is prevented contractually. 

Holding Researchers Accountable

Several processes are still required to ensure that the use of data is restricted to research aimed at health and medical advancements. The first is the evaluation of potential researchers and their discovery aims. The second is that all operations on data are themselves available for public review and are executed in an environment that can leverage security authorizations of data contributors and data researchers alike. The final process required involves the downstream research usage of data shared that should remain under the control of the data subject rather than downloaded to a research environment beyond the control of the data subject.  It is essential that these processes support the ability of data subjects to completely erase their data to be “forgotten.” 

The continual erosion of public trust in the storage and sharing of their medical data only serves to harm medical research. It is the responsibility of the institution to implement and adhere to strict data privacy policies that recognize an individual’s right to control their data. Health research will be enhanced through more representative participation (ie, social, economic, and ethnic diversity) that in turn should empower discoveries otherwise unachievable. By establishing a direct engagement with the individuals in a study as partners, the researcher can support the individuals’ desires to have a positive societal impact through the sharing of their data.  

Scott Kahn

About Scott Kahn, Ph.D.
Scott is the Chief Information Officer at LunaPBC, Board of Directors at Rady Children’s Institute for Genomic Medicine, and former Chief Information Officer and Vice President Commercial, Enterprise Informatics at Illumina. He’s integrating data privacy and security provisions that comply with GDPR and HIPAA at LunaDNA, the world’s first people-powered health database that offers shares of ownership to health data contributors.

Directly drive health discovery by joining the Tell Us About You study. 

GET STARTED

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.

Scott Kahn, Ph.D.

Scott Kahn, Ph.D.

CHIEF INFORMATION + PRIVACY OFFICER

Scott is the former CIO and VP Commercial, Enterprise Informatics at Illumina. At Luna, he’s integrating data privacy and security provisions that keep member data safe, private, and secure.

A man jumps in the air at the top of a mountain ridge
Discovery

Power Your Personal Health Journey This New Year

by Luna

As we ring in the new year with health and well-being top of mind, it’s highly beneficial to proactively manage our health efforts with a complete understanding of what “good health” truly is. Some may argue that good health is the mere absence of disease or infirmity, however according to the World Health Organization, good health is actually the state of complete physical, social and mental well-being.

For years, my wife experienced chronic migraine headaches. In order to proactively manage this condition she kept a diary, tracking the details of her experiences, from how she feels each day, to her activities, and what she eats. As a result, she’s identified patterns of health and migraine triggers beyond what her doctor has been able to identify. Based on her findings, she adopted a Gluten-Free and Dairy-Free diet and participates in daily exercise to alleviate the extensities of her headaches and prevent any further health issues.

My wife is one of many people who live with chronic health conditions. According to the National Health Council, 40% of the US population suffers from some type of chronic condition, including but not limited to fibromyalgia, depression, digestive problems, arthritis, and lack of focus. So what can we do about it? Much of the low-hanging-fruit, in terms of understanding the causes of various diseases has been identified but the diagnosis for the remaining conditions involve putting patients into “clinical buckets.” These diseases that remain untreated are more complex and remain medical mysteries. Discovering the underlying basis of these unsolved conditions requires the analysis of a deep data collected over time, including genomic, EHR, and private or daily personal data. Acquiring this data requires the participation and engagement of hundreds of thousands, if not millions, of people.  Institutions are therefore dependent on the trust of individuals to enable broad data sharing, however once trust is earned and data flows to the institution, what’s the incentive for  the individual to keep contributing? Why should we contribute our personal and health data in the first place and continue to contribute this data over time? What will we receive in return for our efforts?

Sharing data will enable all of us to live longer,  fuller, more fruitful lives. Contributing health and medical data to support research will accelerate health discoveries, enable people to better achieve personal health and fitness goals, while also enabling personalized medicine for all, and early disease detection.”

Studies show that 10% of our health is determined by what happens within the walls of a healthcare provider, 30% by our genetics, and 60% by environmental and behavioral factors. This last 60% is only accessible with the engagement of the individual. Discovering the basis for complex diseases can happen using artificial intelligence to analyze very large sets of genomic, medical, environmental, and personal data. Once enough people with the same illness or condition, and in many cases similar genetics, health habits, demographics, etc.,  share their data, artificial intelligence programs will decipher the underlying causes of the condition. AI can determine why a condition may specifically affect some people and not others despite having the same genetic markers or environmental exposures. Family, friends, and others in our community will reap the benefits of these discoveries for generations to come.

When we share our personal health information, each of us can use our data to assist us on our own health or wellness journeys.”

My would have loved to have a central place to record her health information instead of writing in notebooks. Moving our health information from conversations, jotted records like my wife’s, EHR’s, or even data that we haven’t shared or documented yet, to a structured, central location, will assist us on our own health and wellness journeys. If stored correctly, the data can fuel artificial intelligence algorithms that will help us find the links between our daily routine and the status of our chronic disease. Was the chocolate my wife ate the day before a trigger for her headaches, or did her hard-gym workouts in hot dry weather bring on the migraine? On a simpler note, routine analysis could help us manage our weight, achieve our fitness goals, and steer away from behaviors that lead to lifestyle diseases such as high cholesterol, hypertension, and diabetes.

At some point in our lives many of us, or our family members, may suffer from debilitation chronic or acute diseases, such as early onset childhood ailments, cancer, and Crohne’s disease. Genomic data is changing the way we treat children with early onset diseases and diagnose the molecular basis for most cancers. Microbiome data is sequenced in our quest to understand gut ailments, such as Crohne’s IBD, and SIBO. The new problem we are facing today is that in many cases the penetrance of the genomic marker is low. In other words, for some ailments all persons with the exact same pathogenic mutation or modification of their genome do not all come down with the disease. The genomic mutation does not guarantee a person will suffer from the ailment or when in life it might occur. The genomic marker is not 100% penetrant. The reasons for this are many fold and not always understood. The causes of these conditions are often a complex interaction between different aspects of our lives including our genome, microbiome, environment, and our daily habits. Do we drink, smoke, exercise daily or work stressful work hours? The answers are within our grasp. Technology barriers are not the issue. The challenge is collecting deep data over time at scale.

If we convince enough individuals to share data deeply and over time, we will accelerate our ability to understand the underlying basis for most diseases and chronic conditions.”

Individuals would then be rewarded through the use of their personal data to help on personal quality of life improvement journeys whether the journeys be about resolving personal conditions or achieving personal goals. The data would first enable precision medicine for all participants while  improving our day to day quality of life, our health, and provide the satisfaction of helping others with their own personal health journeys.

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.

Bob Kain

Bob Kain

Executive Chairman of the Board + CO-FOUNDER

Bob was Illumina’s Chief Engineering Officer and, during his 15-year tenure, helped grow the Company from a 30-person startup to a global genomics leader of 3,000 employees at $1.5 billion in revenue.

Wrapped presents on a color background
Discovery

Survey Finds 67% of Americans Would Rather Give a Gift To Benefit The Greater Good

by Luna

A new survey from LunaDNA found that two in three Americans (67%) would rather give a gift to benefit the greater good than receive a material gift for the holidays. Of the majority of Americans who prefer altruistic gift-giving, older adults (65+) are more likely than younger adults to give a gift to benefit the greater good.

LunaDNA’s parent public benefit corporation, LunaPBC, commissioned The Harris Poll to conduct an online survey among over 2,000 adults to better understand sentiment toward people’s relationship towards giving. The results are weighted to be representative of the American adult population across various demographics, including age, gender, and ethnicity.

During the most ‘giving’ time of year, it’s reassuring to know that people are more interested in giving back to benefit others, and not just material gifts. These findings reinforce LunaDNA’s commitment to provide people with a year round opportunity to share their health data and reshape health discovery to improve well-being for all.”

Deb Thompson, VP of Strategy + Operations
Harris Poll Holiday Survey Infographic
Harris Poll Holiday Survey Infographic

The survey findings come days after LunaDNA’s one-year anniversary since receiving approval from the United States Securities and Exchange Commission (SEC) to recognize health data as currency. Last year, LunaDNA made history becoming the world’s first platform to offer ownership shares to individuals in return for  genomic, personal, and health data. This initiative promotes people from study subjects to research partners by including all research participants in the value created from health discovery.

Since then, the LunaDNA platform has been breaking down data silos by crowdsourcing real-world and “missing data” in a manner unlike current models and aggregating that data in a controlled analytics environment to support research. This person-centric model is highly beneficial to pharma, academics, governments, and medical institutions aiming to accelerate medical breakthroughs.

Benefiting the greater good is LunaDNA’s core mission, not only to drive discovery, but to do so while honoring the individual health data contributor. The people-powered health data sharing platform improves participant engagement, efficiency, and velocity of research, and brings people together to share health data to benefit communities worldwide.

The key findings from LunaDNA’s survey enforces that the majority of Americans are more altruistic when it comes to gifting. Subsequently, LunaDNA is partnering with the San Diego Blood Bank to build the world’s largest local research community to support research, enable individuals to become active, valued participants in research, and ultimately enable people to gift a give that would truly benefit the greater good.

I believe the future of discovery and people’s data will be sideways not siloed, connected not dictated, socially responsible, and transparent.”

Dawn Barry, President + Co-Founder at LunaPBC

Learn more about this exciting new partnership

LEARN MORE

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.