The Human Dirofilariasis Research Institute Inc
Because nobody should have to live like this
Programs and results
What we aim to solve
Over 41.1 million people have already been exposed to a disease that there is not even a test for that disease. Due to the lack of any diagnosis without a test there can be no statistics and thus there is no money made available for this important research. Somebody needs to break the deadlock preventing this research. 1) We need to develop a viable clinical test for this disease in humans. All research on this disease completely depends on the correct diagnosis performed first, before you can even figure out who to study. 2) We need locate and provide support to the people affected by this disease before they take any drastic measures to end their misery. Research can not even happen if you don't have people to study. 3) We need to develop a treatment protocol that can be used in the clinical setting once a test is developed. 4) We need to educate the general public to both recognize the potential symptoms and also to advocate for the required research that is needed.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Community Outreach
Currently, those affected by this chronic disease have no public representation. Since this disease has no test there can be no statistics, and chances are they do not even know why they are so sick. Since the doctors have no tools they are unable to help their patients, and even worse, commonly misdiagnose them as having a mental condition. HDRI intends to reach out to this population, document the problem, and raise the awareness of the scientific community to address this problem.
Education
Doctors are far too busy to spend hours each day to keep up with every disease. Information on occult human Dirofilariasis is scattered widely across many unrelated journals in many different countries and nobody has taken the time to perform a comprehensive study of these materials to produce it in an easy-to-digest format. HDRI intends to do a survey of all these journal resources and to assemble it into an easy-to-digest format and discuss the latest findings and their relevance to the chronically ill community. There is a lot of publicized misinformation on this disease, based solely on old assumptions without evidence, and that misinformation needs to be corrected.
Biomedical Sensor Technology
HDRI got its start through the volunteers working at the Johns Hopkins Applied Physics Laboratory and intends to investigate a number of possible sensor technologies that might be able to help with studying this nearly invisible disease. We have conducted a proof of concept for an Infrasonic Stethoscope which was able to record the complex vibrations of a filaria under the skin. We intend to investigate other sensor technologies that might be able to image these very fine structures and potentially help to diagnose the disease. We are currently working with ultrasound and are investigating the possibility that this can be turned into a diagnostic tool to assemble the first cohort group needed to begin clinical research. If you don't even know who to study it is impossible to even get started.
Immunological Research/Modeling
Dirofilaria has been called "the master of immune regulation". Once onboard the host it secretes molecular compounds called secretomes which turn the knobs on the human immune system thus making them impervious to our natural defenses. They secrete mRNA into the bloodstream which then modify the hosts immune response in order to stay hidden. If we have a good understanding of all these molecular pathways affecting our immune system then we will be halfway there to finding a cure. The best drug we have today are so toxic that it will never be prescribed to a human, so finding a more natural approach that works with the human immune system to turn the knobs back to "normal" is likely the best way to fight this disease.
Where we work
External reviews
Photos
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
There are somewhere between 41.1 Million and 137.2 Million people in the US that have already been exposed to a disease which can not yet even be diagnosed simply because there is no test for the disease. The disease itself can not even be studied clinically because there is no way to tell exactly who we need to study. It is therefor imperative that we find a way to gather together a cohort group just to begin to assess what the true infection rate is in the human population. In dogs the infection rate is near 100% and we have no evidence that suggests this rate in humans will be any less. Even if the human infection rate is a very low percentage the total would still amount to a very large number of people suffering from a disease that flies completely under the radar of the CDC. We need to do better as there are many maladies such as hyperglycemia (aka Type 2 diabetes) that could actually be attributed to this disease but there is currently no way to research this.
Advocacy - We need to stimulate the scientific community to give more precedence to this disease. The people who have this disease currently have no collective voice.
Education - The general public need to be educated so that they can understand this disease and the symptoms that it presents. As long as this disease remains clinically invisible due to the lack of a test, these people will continue suffering in silence with only a single option for making this suffering end.
Outreach - HIPAA regulations prevent doctors from sharing information on their patients yet we need to somehow find enough volunteers who think they might have this disease so that we can even begin to research the disease.
Research - We need to develop a viable test for this disease. Without a viable test the necessary clinical research can not even begin.
Support - These people who do actually have this disease need support, compassion, and a way to organize their efforts.
The "final option" can not allow to be allowed to remain the default answer. HDRI.org is trying to change this, but we need your help in order to make a difference in these peoples lives. They deserve better.
We at HDRI have lots of ideas for a path forward but we need the financial resources and volunteers to move these projects forward. If you care about your fellow human beings we could use your help either financially, as a volunteer, or a Board member. Please help us help these people.
What are the organization's key strategies for making this happen?
Investigate all medical technologies that might potentially lead to a proper diagnostic test for the disease. (Ultrasound, serologic, near-IR, chromatography, PCR, etc..)
Educate the public about the true nature of this disease to hopefully attract people that need to be tested. When we first develop a methodology for testing we will work closely with their doctor for a proper assessment of their condition. If/when we are properly certified with the needed diagnostic technology we may offer our services directly to the public.
Publish in peer-reviewed journals to help correct the scientific record for this disease. Many assumptions in this literature need to be corrected using actual evidence.
We need to give these people a voice in the social media to attract potential collaborators where the proper research experiments can be designed and used to collect the proper statistics.
Provide social support and guidance to those affected people in hope of keeping them away from that mental 'Dark Place' and give them some hope of a better life in the future.
What are the organization's capabilities for doing this?
The HDRI.org president and all current board members are current/former employees from the Johns Hopkins Applied Physics Laboratory. We are trained in Physics, Biology, Computer Science, Sensor Technology, and able to think outside-the-box to find new and innovative solutions to many problems.
What have they accomplished so far and what's next?
1) We have already investigated infrasonic diagnostics and have successfully recorded the vibration of a filaria which validates one of several physical sensations is normally felt by a person infected with this disease. This is proof that this is physical and not a neurological or psychological manifestation. But to be of any clinical value in the diagnostics of this disease the infrasonic sensor itself will need to be redesigned to be more sensitive to make this a viable methodology. While this is a binary test for infection, it will likely have a high false negative presentation in any clinical setting but it could be used as a verification step for what any other tests should produce. Its a first step for any clinical verification.
2) We have acquired an Ultrasound machine (Chison eBit 30 18MHz) and are working on various techniques needed to improve the imaging of filaria which normally reside in the vascular system just under the skin. This is technically challenging because the small diameter and low density of the filaria makes its detection borderline for the physics of this technology. It may be possible to design an ultrasound machine using plane-wave technology or Artificial Intelligence to enhance this detection capability but that will require a more specialized setup than we can afford right now. For the time being we are working on how to improve the imaging for presentation quality in journal publications. Our hope with ultrasound is to get 'good enough' imaging so that we can assemble a preliminary clinical cohort study.
3) It may be possible to produce a near-IR camera system that can detect the filaria in the veins under the skin by viewing the IR reflectance in the proper spectrum range. Hemoglobin absorbs/reflects certain IR spectrum while the carbohydrate coating on the filaria are likely are different. By illuminating the skin over the filaria we might be able to image the filaria in real-time, which would then open the gates to clinical research and serological diagnostics.
4) Dirofilariasis in felines has been well studied and a large number of them have the same occult infection characteristics as humans do. There are a number of test kits licensed for detecting dirofilaria in cats that might also work for humans, but someone needs to actually conduct a study to test this concept. If multiple test-kits which work by different biological pathways can demonstrate the same positive result on each patient then this would be verification that the tests work correctly in humans as well. HDRI would require enough funding to collaboratively work with a clinical establishment to conduct a test to collect enough statistics to analyze which specific test-kits might be viable for clinical research going forward.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization using feedback from the people you serve?
To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals
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Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback
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What challenges does the organization face when collecting feedback?
It is difficult to get the people we serve to respond to requests for feedback, It is difficult to get honest feedback from the people we serve
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
The Human Dirofilariasis Research Institute Inc
Board of directorsas of 10/22/2023
Steve Coleman
HDRI.org
Term: 2020 -
Tyler Orden
JHU/APL
Term: 2021 -
Tyler Oorden
JHU/APL
Thomas Corcoran
JHU/APL
Jack Draper
JHU/APL
Steve Coleman
HDRI
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Not applicable -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Not applicable -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
Gender identity
Transgender Identity
Sexual orientation
Disability
We do not display disability information for organizations with fewer than 15 staff.
Equity strategies
Last updated: 09/07/2021GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more
- We ask team members to identify racial disparities in their programs and / or portfolios.
- We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
- We disaggregate data by demographics, including race, in every policy and program measured.
- We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.