New Ideas Emerge in Alzheimers

New Ideas Emerge in Alzheimer’s Research

Take a look at any recent major news publication. Information about the latest scientific discovery or technological advancements can be found in nearly every issue.

Yet for a disease that currently affects over 5 million Americans and is projected to affect almost 14 million by 2050, shockingly little progress has been made toward effective treatment, let alone a cure. Alzheimer’s disease has perpetually puzzled researchers and healthcare providers alike, leaving the millions of people affected by the disease to wonder if there is any hope. 

Alzheimer’s disease (AD) is a multifactorial condition. This means no one single cause is responsible for development of the disease. While there are clearly both genetic and environmental contributions, the specific cause or tipping point likely varies from person to person. This fact alone makes identifying a silver bullet treatment plan very difficult. How do you effectively target a disease with a single treatment if the disease has multiple and varying causes? Additionally, AD can be challenging to diagnose, especially in the early stages of disease when available treatments may be the most beneficial. Many dementias look similar, although their underlying causes may vary dramatically. The lack of apparent progress towards treatments to slow progression and a prevention or cure could certainly be attributed to this combination of factors, at least in part.

Why is there not a cure for Alzheimer’s yet?

Although diagnosis and treatment of AD face a variety of challenges, there has been a significant amount of research focused on potential treatments and possible cures. 

Researchers were confident a treatment would be identified within mere decades. Unfortunately, the research performed, and subsequently published, all centered around the single, prevailing theory that beta-amyloid accumulation was the target. A recent investigative report published by STAT described how research that explored ideas outside this commonly held belief was discounted, unpublished and in some cases ended the careers of researchers desperate to find answers. Opportunities for novel discoveries, breakthroughs and unpopular hypothesizes rarely emerged due to this tunnel vision within the AD-research landscape. 

But can the lack of AD treatment or cures be solely placed on the shoulders of research suppression? Likely no. Funding for AD research has historically been significantly lower than many other common diseases. Until recently, National Institutes of Health (NIH) budgeting provided less than $500 million for research focused on AD and other dementias. In comparison, funding for AIDS research neared $3 billion and cancer research received more than nearly
$5 billion in funding. 

The funding disparity is fortunately lessening as significant increases in the NIH budget for AD have been made in recent years. Community-supported fundraising campaigns like the annual Walk to End Alzheimer’s are also a growing source of not only fundraising, but awareness of the disease. 

In light of these recent advances, it is easy to see how the combination of novel research suppression with lack of funding certainly contributed to the absence of significant discoveries over the past several decades. 

New ideas emerge in Alzheimer’s research

Fortunately, research focusing on different treatment targets is beginning to emerge. Scientists are now recognized and supported for their work around ideas that years ago would have been ignored at best, stifled at worst. Currently, there is early-stage research evaluating exciting and promising ideas, such as the use of vaccines to aid in prevention and gene therapy to help alleviate symptoms. And data collection focused on the variety of potential risk factors can also be used in a more person-centered way given the recent advances in daily health monitoring tools. 

Similarly, while there is limited scientific evidence, researchers continue to explore links between herbs with anti-inflammatory and antioxidant properties like turmeric on disease prevention and progression. 

Yet more is needed for research, and the missing piece may just be you. You as the patient. You as the caregiver. You as the unaffected. You can help advance discoveries in Alzheimer’s disease.

Dawn Barry, Board Chair of the Alzheimer’s Association San Diego/Imperial Chapter and LunaPBC™ Co-Founder and President explains “we must start getting everyone involved in research. Not just people affected but everyone in the ecosystem.” This is why LunaDNA is so passionate about providing you a safe and trusted place to partner with researchers.

“Your data is never sold to third parties and you always have the option of ‘unsharing’ your information,” Barry says. LunaDNA™ also provides a way to overcome the challenge of retrospective research, where data is only obtained after the disease has developed. Barry argues a better approach is to begin collecting information earlier, as “we have the best chance of finding markers if we begin to study and track health before disease onset happens.” 

Without people who are willing to participate, research would simply not exist. If you or someone you love is affected with AD, consider if research participation is right for you. 

The combination of increased patient and community participation, funding and the scientific community’s acceptance of a wider variety of research ideas is promising. Many are optimistic this combination of factors will finally move us closer to finding legitimate treatments for AD.  And perhaps these treatment breakthroughs will lead to the cure so desperately desired by the millions of people affected by AD every day.

Prioritize the Safety of Your Health Data

Here’s Why You Should Prioritize the Safety and Security of Your Health Data

By Lena Huang, LunaDNA Contributor

Over the past few decades, scientists and researchers have made great strides in understanding how to use genomic data to drive important medical discoveries.

However, as the scientific community continues to gain access to genomic data at rapid speeds, concerns about the privacy of that data are emerging. Today, there are hundreds of companies that offer genetic testing for thousands of disease-causing genes. Many of these companies also offer whole-exome sequencing, in which all of an individual’s protein coding genes are analyzed for mutations that may cause disease. While this testing can save lives, it also creates a large amount of data that may or may not be secure.

Over the past few decades, scientists and researchers have made great strides in understanding how to use DNA data to drive important medical discoveries. However, as the scientific community is beginning to gain access to more data than ever before, concerns about the privacy of that data are emerging.

Today, there are many companies that offer genetic testing for disease-causing genes. Some of these companies also offer whole-exome sequencing, in which all of an individual’s protein-coding genes are analyzed for mutations that may cause disease. While this testing can save lives, it also creates a large amount of data that may or may not be secure.

DNA data plays a significant role in accelerating medical breakthroughs, so it’s no wonder why more tools are becoming readily available to drive discovery. Advances in technology allow doctors to analyze genetic data quicker and can be used to discover a person’s risk for developing disease, including getting neurological diseases, such as Huntington’s disease or Alzheimer’s disease. Although the advances in health technology have allowed people to better understand their risk for certain conditions and diseases, this information could be used adversely if it falls into the wrong hands.

For example, what if an insurance company could discriminate if they knew a person was at a greater risk for arrhythmia, stroke, or heart attack? What if an employer could fire an employee if it discovered that person was genetically predisposed to developing dementia in the next 10 years? What if an employee did not know his or her employer had access to this genetic information?

Sadly, cases of genetic discrimination are already happening. In 2012 in Palo Alto, Calif., Colman Chadam was asked to transfer middle schools because he was a carrier of cystic fibrosis (CF), even though he was unaffected by the disease. Two children with CF were already attending the school, and because individuals with CF should avoid contact with others who have the disease due to cross infection, their parents petitioned the school district for Chadam to be transferred. Chadam’s parents filed a genetic discrimination lawsuit so he could attend the school.

In 2012, employees of Atlas Logistics Group Retail Services in Atlanta were asked to submit to a cheek swab in an attempt to identify who had been vandalizing one of its warehouses. Two employees recognized the dangers of submitting their personal genetic information and learned that they shouldn’t have to under the Genetic Information Nondiscrimination Act (GINA). GINA makes it illegal to discriminate against employees or applicants because of genetic information. GINA also states that it is “an unlawful employment practice for an employer to request, require, or purchase genetic information with respect to an employee.”

How can we avoid potentially dangerous situations involving our own DNA? It is up to individuals to be informed and do their research on the companies that store and use their data.

So before sending in a saliva sample or DNA data, be sure the company you’re sending it to will strip all information of personal identifiers. Make sure any company that you send data to understands the importance of privacy and will keep your data secure. Understanding how companies plan to use your data not only allows you to maintain control but also helps you avoid situations where your personal information ends up in the wrong hands. Read the privacy and terms of use policies when your personal data is involved.

The control of data privacy is all about being able to decide who can access your data, under the conditions and for the purposes that resonate with you,” says Scott Kahn, Chief Information Officer at LunaPBC. “Isn’t this a better model of control than having institutions make these decisions for you?”

LunaDNA takes your privacy seriously. All personal information is removed and de-identified from any health or DNA data that is given to LunaDNA. Personal information is stored on a separate database from the health data so that there is no connection. All data is securely encrypted to protect your privacy. Finally, you are in control of your data, and it never leaves the LunaDNA platform. Researchers can only access the de-identified data on the platform and cannot export the information. You can choose to access or delete your information at any time.

Discoveries depend on research which relies on data. We think data use should permissioned by you. Contributing to science by sharing health and genetic information will allow researchers to perform important studies that are needed for medical breakthroughs. During this exciting time, remember that while sharing DNA data is absolutely vital to advancing the field, it is equally important that you share it safely.

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.


LunaPBC Named 2019 World Economic Forum’s Tech Pioneer

We’re thrilled to announce that the World Economic Forum (WEF) today named LunaPBC™, the public benefit corporation behind LunaDNA™, one of its newest Technology Pioneers — ahead of hundreds of up-and-coming tech companies, worldwide. This designation globally recognizes LunaPBC as a startup breaking health data barriers towards the goal of accelerating health discovery through people-powered research.

Medical breakthroughs and improving quality of life depend on comprehensive, continuous, real-world health data organized to support medical discovery. People are the best curators of their health data, and we need them as partners in research,” said Dawn Barry, president and co-founder, LunaPBC. “This model brings together social responsibility with technology for real-world, frictionless, passive information capture. We can imagine research as a continuous relationship versus a moment in time transaction.”

WEF was established in 1971 as an International Organization for Public-Private Cooperation, engaging the foremost political, business and other leaders of society to shape global, regional and industry agendas.

Since 2000, WEF established the Technology Pioneer community to recognize early to growth-stage companies from around the world that are making waves in the design, development, and deployment of new technologies and innovations, and are positioned to have a significant impact on the world. With this designation, LunaPBC joins acclaimed Technology Pioneers, including Wikimedia, Twitter, Spotify, Google and AirBnB.

LunaPBC is now immersed into WEF’s events and initiatives, where we’ll be at the center of cutting-edge insights and novel perspective in world-changing discussions. From July 1 to July 3, Bob Kain will be in Dalain, China, participating in the WEF Annual Meeting of the New Champions. There, he’ll be discussing the impact of ground-breaking genetics and molecular science related to human longevity in a session entitled, “What If: You Could Live to 150?”. Select awardees will also attend the January 2020 Annual Meeting in Davos, Switzerland to continue contributing to WEF initiatives over the next two years.

LunaPBC team from left to right: James White, Thomas Rodriguez, Debora Thompson, Kirby Bloom, David Lewis, Dawn Barry, Bob Kain, Scott Kahn, Alexandria Leonidova, Bojil Velinov, Mayank Tyagi, Genevieve Lopez
Bob Kain
Bob Kain, CEO + Co-founder at LunaPBC

This exciting news comes just one month after our funding announcement from top tier venture capitalists, including ARCH Venture Partners, Bain Capital Ventures, F-Prime Capital, Illumina Ventures, and Osage University Partners. A few months before, we proudly announced our strategic partnership with Genetic Alliance, the world’s leading nonprofit health advocacy group committed to transforming health research for individuals and communities.

We’re only halfway through  the year and together we’re already paving global paths in health research. WEF’s Technology Pioneer 2019 award is a reminder of the strides we’re making as a community directly contributing to health discovery. Thank you for being a part of this journey with us at LunaDNA.

Your Health Data, Our Principles: How To Feel Confident Sharing Your Health Data For Research

LunDNA was established by the public benefit corporation, LunaPBC with one powerful purpose — to put people at the center of health research.

By doing so, we ensure the fairness of value distribution amongst all research participants, the advancement of science and health discovery, and the acceleration of treatments and cures to diseases.

The first ever people-powered health data platform owned by its community of health data contributors now exists in today’s data-driven, high-tech world, but not without strict values and principles that power its mission.

Because we believe people are at the core of driving health discoveries, we have taken considerable measures to define the relationship between individuals contributing data, companies obtaining data, and researchers utilizing data.

The following four concepts are ones we encourage you to understand before sharing your personal data to research.

1. Transparency

Where is your data, who is using it, and how is it being used at all times?

Transparency is open, honest communication, which lends itself to accountability and responsibility to the individual from the company or researcher. It promotes a culture of authenticity, cooperation, and trust which is essential when sharing your most personal information.

Transparency can take many forms, from a company displaying concise, easy-to-understand policies, to regular company updates or newsletters. Transparency can also be as simple as resources on their site for an individual to find out additional information at their convenience.

Be sure to stay clear from companies who “sell” your data to third parties.

“Third parties” is a catch-all phrase for any other company not legally affiliated with the company with whom you shared your data. Once your data is sold, you lose control of your data.

2. Control

Who really owns your data once it’s been shared? Can you access or delete your data from any platform at any given time?

Contrary to popular belief, control of your personal data is not a luxury, but rather should be an essential part of your regular data transactions. When sharing your health data to research, control can be perceived as a string tied from one end (company) to the other end (you). The string can never be split or broken, as only one copy is on the platform. Your data is never duplicated nor does it ever leave the platform. Only you can quickly and easily access your data, delete some or all of your data, and provide consent as to when it is used for research.

Control over your data is the ease of accessibility to your data on any given platform, provided with clearly-written policies surrounding your decision to upload or delete your data, including how long each process takes.

Be cautious of companies that require you to submit written requests to delete your data, download processes that are not “push-button” on the company’s website, policies that contradict best practices, or any misleading information regarding the control of your data.

3. Privacy and Security

Is your identity protected from data breaches and is its security the utmost priority?

There’s no escaping the abundant news of data breaches, cyberattacks, and government surveillance that bombard our screens every day. It’s no wonder why it’s difficult to identify what companies are prioritizing the security of your most personal information.

In truth, most companies are conducting at least the minimum amount of safeguarding of your information, but very few make it a top priority.

A long-standing regulation in the United States, the Health Insurance Portability and Accountability Act of 1996 (HIPAA) set national standards for protecting “individually identifiable health information by three types of covered entities”.

For simplicity sake, let’s break it down.

First, “individually identifiable information” is defined as pieces of information that could be used individually or in minimal combinations to re-identify you. This includes your name, your address, email address, birth date, personal phone numbers, fingerprints, and much more. To be “HIPAA compliant” a company must ensure this type of information is not accessible by anyone but the individual and authorized individuals, such as your doctor or caregiver. For instance, if you share a lab test result report for research, before it can be used for research, it must be stripped of your name, the date of the test, your address and other types of information that might be on the report that could identify you.

Second, “covered entities” is specifically defined to cover healthcare providers and other similar groups. It does not typically apply to companies performing research with your health data. The European Union (EU) has recently enacted farther reaching regulations on data privacy and security under the EU General Data Protection Regulation (GDPR) and is seen as fundamentally changing the way data is handled. Other countries are exploring similar regulations, and global companies are, in many cases, struggling to catch up to the new gold standard.

Meanwhile, companies are also focused on securing their technology platforms, whether that is a simple website or a much more extensive platform. Related buzzwords you may be familiar with include encryption, firewall, hash, private keys, etc.

Since security practices and cyberattack techniques are constantly evolving, companies need to prioritize security, ensuring they remain up-to-date with best practices and well-protected against any digital threats.

This doesn’t fully guarantee that a breach won’t happen, but extra precaution will dramatically reduce the likelihood. Often, companies aren’t able to share their security practices in detail, as that provides valuable information for a hacker to use, but there are other ways to understand the importance of security from a particular company.

Prioritized privacy and security will take the form of clear privacy and terms of use policies, two-factor authentication and other account security options, HIPAA compliance, GDPR compliance, security testing certifications, safeguards to prevent re-linking individually identifiable information to other data, and education for team members focused on privacy and security.

Look out for companies who have poorly described privacy policies, lack proper methods of authentication and account verification, and have ambiguous security statements, like “bank-level security”.

4. Shared Value

Who benefits from your data — you, the company, or the world?

Some companies today offer you certain services in return for your data, while most companies ask you to give or sell your data for research. Once your data is exchanged with these types of companies, you are no longer aware of its use, the purpose of its use, or any value gained from its use. Additionally, any health discovery that derives from the use of your data is rarely communicated to you.

The goal of any company driving health discovery should be to serve the greater good, including treating you fairly and ethically for your personal health data. Valuing those who made it possible to discover vital treatments and cures to conditions and diseases – to put simply – is the right thing to do.

Be cautious of monetary returns with uncertain value, including crypto or reward points, or no share valued offered where you are disintermediated from the income made from your health data.

Today we live our lives bouncing to and from the digital world and physical world. Understanding the rules of each environment, especially when it applies to your most personal and valuable information, is crucial in living a secure lifestyle. Educating yourself on your rights and the regulations of your health data can help hold companies accountable for their actions and allow you to feel confident in sharing your health data for research.

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.

Is Lactose Intolerance Genetic

Is Lactose Intolerance Genetic? | How to Know If You’re Lactose Intolerant

Lactose intolerance has both genetic and non-genetic causes. Lactose intolerance can happen at any age. Learn the basics of lactose intolerance and how it could affect your health.

People with lactose intolerance are unable to fully digest sugars found in dairy products. There are many reasons people become lactose intolerant, and genetics may play a role.  According to the U.S. National Library of Medicine, about 65 percent of the world population (or nearly 5 billion people) are lactose intolerant. In East Asia, the number is more than 90 percent.

Know Your Health: The Genetics of Lactose Intolerance

Lactose intolerance is the inability to eat dairy without having an adverse reaction. It occurs when the body doesn’t produce enough of an enzyme that aids in the digestion of sugars found in dairy. Learn about the different types of lactose intolerance, genetic disposition, how it is diagnosed, and how to manage it with this guide:

  • What is Lactose Intolerance?
    • Types of Lactose Intolerance
    • Lactose Intolerance Symptoms
    • Am I Lactose Intolerant?
  • What Causes Lactose Intolerance?
    • Is Lactose Intolerance Genetic?
    • Is Lactose Intolerance Inherited?
    • Can You Become Lactose Intolerant?
    • Lactose Intolerance Risk Factors
  • Lactose Intolerance Test — How It’s Diagnosed
    • Lactose Intolerance Management

What is Lactose Intolerance?

Lactose intolerance is the inability to fully digest sugars found in dairy products. Lactase is an enzyme produced in the small intestine that breaks down sugars in dairy products into the simple sugars glucose and galactose, which are absorbed into the bloodstream as fuel. Lactose-intolerant people do not generate enough lactase for the process to work.

With lactase in low production, the undigested lactose passes into the colon where it interacts with bacteria. This interaction causes the typical symptoms of lactose intolerance, which are bloating, gas, stomach cramps, diarrhea, nausea, and sometimes vomiting.

Milk allergies, while similar, are less common and have symptoms with the potential to be far more severe with violent vomiting, bloody stools, and anaphylactic shock. Milk allergies often appear early in life, while lactose intolerance generally appears in adulthood.

Types of Lactose Intolerance

There are four distinct types of lactose intolerance. Two are genetically predisposed, one is often temporary, and the fourth is usually brought on by illness or injury.

  • Primary lactose intolerance is the most common type. Most people with primary lactose intolerance are genetically predisposed to significantly reduce lactase production between the ages of 2 and 5. As enzyme levels decrease, dairy becomes harder to digest and symptoms arise. Symptoms may not show until adulthood.
  • Secondary lactose intolerance is caused by an injury or illness. Any negative impact to the small intestine can cause less production of lactase. Diseases, such as Crohn’s and celiac, are commonly linked to this type of lactose intolerance. Surgery, medication, or chemotherapy can also hinder production of the enzyme. This type of lactose intolerance can be temporary or permanent.
  • Developmental lactose intolerance occurs in babies who are born prematurely. It usually resolves after the baby’s small intestines are fully developed.
  • Congenital lactose intolerance is the rarest type. It occurs when a baby is born with little to no lactase production in the small intestine. This genetic disorder can only be passed to a baby if both parents have the mutated gene.

Lactose Intolerance Symptoms

Symptoms and severity vary depending on the type of lactose intolerance and how much dairy was consumed. Typically, the following symptoms hit within a few hours of ingesting dairy:

  • Stomach cramps
  • Bloating
  • Diarrhea
  • Gas
  • Nausea
  • Pain in the abdomen
  • Vomiting
  • Stomach rumbling

Am I Lactose Intolerant?

People who experience any of the symptoms listed above after eating dairy may be lactose intolerant. Whether you have one of the symptoms or all of them, you should seek medical treatment or advice from a physician if you are uncomfortable or over-the-counter medications do not work.

What Causes Lactose Intolerance?

The most common type of lactose intolerance, primary lactose intolerance, is the result of an inherited genetic trait that runs in families. When a baby stops breastfeeding, the genetic response is to decrease the expression of the LCT gene, which provides instructions for making lactase in the small intestine. When lactase-producing cells line the walls of the small intestine, they help absorb nutrients as food passes through. Without this enzyme, lactose is broken down by bacteria inside the colon, which causes the symptoms of lactose intolerance.

Is Lactose Intolerance Genetic?

The type of lactose intolerance a person suffers from determines whether genes play a role or not. For primary lactose intolerance, the most common form, genetics do play a role. Located within chromosome 2, the MCM6 gene helps control the activity or expression of the LCT gene.

The ability to tolerate lactose depends on the type of MCM6 variant a person has. The LCT gene follows the instructions provided by MCM6 and either produces adequate lactase to digest milk or not enough. For babies born with congenital lactose intolerance, the MCM6 gene is responsible to little or no lactase production at birth.

Can You Become Lactose Intolerant?

Lactose intolerance can be triggered by injury, illness, medication, or surgery. Any negative impact to the small intestine can trigger lactose intolerance. This type of lactose intolerance can be temporary or permanent. Primary lactose intolerance can set in later in life, usually once an individual reaches adulthood.

Lactose Intolerance Risk Factors

Lactose intolerance can happen at any time for a myriad of reasons. For example, taking antibiotics or having a bout of diarrhea can interfere with the small intestine’s ability to produce lactase. Below are the most common risk factors associated with having any of the four forms of lactose intolerance:

  • Crohn’s disease
  • Celiac disease
  • Injury
  • Surgery
  • Aging
  • Medication
  • Chemotherapy
  • Antibiotics
  • Diarrhea

Lactose Intolerance Test — How It’s Diagnosed

If you get the same symptoms after consuming dairy products, you should discuss the symptoms with your doctor. A doctor can administer a hydrogen breath test. Normally, hydrogen gas is barely detectable in the breath, but if you are lactose intolerant, you will have undigested dairy products fermenting in the colon, which produce hydrogen. The test takes about two to three hours and begins with drinking a lactose-heavy beverage. Afterwards, the patient’s breath is analyzed at regular intervals to determine the amount of hydrogen. Hydrogen is detectable at higher levels if someone is lactose intolerant.

Genetic tests are also available to analyze some forms of lactose intolerance. Additionally, a doctor can do more invasive procedures, such as an endoscopy, to view the inside of the intestines with a camera or take tissue samples from the inside of the gut.

Lactose Intolerance Management

While there is no cure for lactose intolerance, there are successful ways to manage the condition. The simplest way is to avoid dairy products that trigger bouts of discomfort. It’s still possible for some lactose-intolerant people to eat dairy products on occasion if a few rules are followed to avoid discomfort.

Eating small amounts of dairy products with other non-lactose foods can sometimes help you successfully deal with the side effects. The type of lactose-rich foods chosen can make a difference. Yogurt is generally easier to digest than milk. Supplements that help digest lactose are also available to take before eating dairy. Be sure to consult a doctor before adding any supplements to a diet.

Although great strides have been made in deciphering the genetics of lactose intolerance, more research needs to be done to better understand how to treat and manage the condition. As we understand more about the genetics of the human body, new research will lead to scientific breakthroughs to help people with lactose intolerance. You can directly contribute to health research with your unique health data, which enables the research needed to find treatments and cures to not only lactose intolerance, but other ailments as well.