The Human Dirofilariasis Research Institute Inc

Because nobody should have to live like this

aka The Dirofilariasis Research Institute Inc   |   Westminster, MD   |  https://hdri.org

Mission

Occult Dirofilariasis (human heartworm) is a long-ignored disease in the US and worldwide. There is currently no viable test for this disease in humans, and the only know cure in animals is so toxic that it will never be prescribed to a human. Because nobody is diagnosed, no statistics can ever be collected. The people affected by this disease are forced to suffer in silence with all kinds of immunologically caused morbidities that will never even be associated with the underlying disease. Many people will never even know they have this disease yet they will suffer from its effects. HDRI wants to change all this through patient advocacy, research, development of proper research tools, facilitating communications, and providing education about this little known disease.

Notes from the nonprofit

We have had a slow start due to covid-19 and are just now opening for business.

Ruling year info

2020

President

Steven Lee Coleman

Main address

PO Box 3083

Westminster, MD 21158 USA

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EIN

84-4752314

NTEE code info

Specifically Named Diseases Research (H80)

IRS filing requirement

This organization is required to file an IRS Form 990-N.

Communication

Blog

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

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.

Population(s) Served
Chronically ill people

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.

Population(s) Served
Chronically ill people

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.

Population(s) Served
Chronically ill people

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. 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 immune system is likely the best way to fight this disease.

Population(s) Served
Chronically ill people

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    We will be seeking out people who are infected with dirofilariasis to better understand the disease and to see how we might be able to help this community. We will conduct 1-on-1 interviews when possible and conduct surveys.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Suggestion box/email,

  • 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,

  • What significant change resulted from feedback?

    We are currently just opening for business but one of our main goals is to reach out to these individuals and learn everything we can about their struggle with this disease. That information will feed back and provide the board members with prioritization of projects and financial resources.

  • With whom is the organization sharing feedback?

    The people we serve, Our board, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    Without feedback from the community it will be impossible to truly advocate on their behalf. Building this relationship between the scientific community and those suffering with this disease is key to raising awareness of the disease in a way that then translates directly into the financial support needed to fight this disease. We need to give these people a voice to be sure they can be heard by those who have the power to create change.

  • 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,

  • 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

The Human Dirofilariasis Research Institute Inc
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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lock

Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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The Human Dirofilariasis Research Institute Inc

Board of directors
as of 6/6/2021
SOURCE: Self-reported by organization
Board co-chair

Steve Coleman

HDRI

Term: 2020 -


Board co-chair

Tyler Orden

JHU/APL

Term: 2021 -

Tyler Oorden

JHU/APL

Thomas Corcoran

JHU/APL

Nicolas Di Lenardo

JHU/APL

Jack Draper

JHU/APL

Steve Coleman

HDRI

Joseph Burnstein

JHU/APL

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • 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

SOURCE: Self-reported; last updated 06/06/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Decline to state

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 03/15/2021

GuideStar 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

Data
  • 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.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.