PLATINUM2024

DYSAUTONOMIA PROJECT INC

Educate, Advocate, Empower

Clearwater, FL   |  www.dysproject.org

Mission

The mission of The Dysautonomia Project (TDP) is to educate healthcare professionals, patients and communities about dysautonomia.

Ruling year info

2014

Executive Director

Alexandra Key

Main address

4592 Ulmerton Road Suite 104

Clearwater, FL 33762 USA

Show more contact info

EIN

46-5433260

NTEE code info

(Health - General and Rehabilitative N.E.C.) (E99)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The mission of The Dysautonomia Project (TDP) is to educate healthcare professionals, patients, and communities about dysautonomia, an umbrella term used to describe any disorder of the autonomic nervous system. Dysautonomia is an invisible illness and may be one of the most misdiagnosed medical conditions of all time. These disorders can be mild to debilitating, and usually involve abnormal symptoms in many organ systems including cardiac, gastrointestinal, neurological, pulmonary and many others. The biggest problem in autonomic medicine today is the lack of knowledge in communities and community-based healthcare professionals. This has resulted in a six-year average diagnosis time for someone suffering from dysautonomia, when a strong indication of dysautonomia can be found in only fifteen minutes of simple in-office testing.

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?

The Residents Course: Advancing Autonomic Medicine

In partnership with the American Autonomic Society, The Dysautonomia Project hosts an annual three-day course in autonomic medicine for second-year medical school residents or higher. This intensive three-day course, developed using The Penry Course model for Epilepsy, brings in top autonomic doctors from across the country to provide in-depth education about dysautonomia/autonomic medicine to 36 second-year medical school residents from across the country. Currently, there are less than 70 board certified doctors in autonomic medicine and only about 150 providers in the United States who diagnose and manage these conditions. This number pales in comparison to the estimated 14 million people in the US (70 million worldwide) suffering from dysautonomia. We predict that in the first few years of the course, we will more than double the number of doctors able to diagnose and treat autonomic cases.

Population(s) Served

The Clinician Program (TCP) is an eight hour, accredited CME/CEU program serving up to 150 established doctors, nurses and other advanced healthcare providers from across America. The program is designed to instruct clinicians in: Properly identifying autonomic dysfunction, administering clinical exams, interpreting lab evaluations, initiating first line therapies and referring to specialists as needed.

Population(s) Served

At The Dysautonomia Project, we know managing autonomic disorders can be difficult and overwhelming. That’s why we’ve created DysCourse: Tools for Managing Autonomic Disorders! DysCourse is a special patient and caregiver event held annually that puts vital education directly in the hands of those who need it most. Whether someone is diagnosed or undiagnosed, a caregiver, friend or healthcare provider, DysCourse can help them better understand autonomic disorders through an array of educational topics taught by some of the world's leading specialists.

Population(s) Served

TDP reaches communities across America through in-person education. From national conferences to local clinics, nursing schools to school systems, the power of education is proving to significantly lower the time to diagnosis.

Population(s) Served

Where we work

Videos

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of public events held to further mission

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Number of copies of work distributed/sold

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Number of The Dysautonomia Project books sold globally

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

TDP's vision is to reduce the time to diagnosis from 6 years to only 15 minutes through simple in-office testing. The organization aims to be the global leader in dysautonomia education.

While there is no cure for dysautonomia, once diagnosed, symptoms can be managed. The number one form of treatment for dysautonomia is education. This is especially true when it comes to addressing the gap in education among healthcare professionals who should be able to recognize, diagnose and treat dysautonomia. Therefore, the lifesaving dysautonomia education TDP provides to healthcare professionals, patients, and communities is vital to improving patient outcomes and quality of life. To date, TDP has provided free, local, in-person education and awareness about dysautonomia to 929 doctors, 600+ nurses and over 450 patients. TDP’s website also offers the TDP Academy, the first free, online educational video library making the world’s top autonomic specialists in reach of anyone.

In partnership with the American Autonomic Society (AAS), The Dysautonomia Project is excited to launch The Residents Course: Advancing Autonomic Medicine, a Mini-Fellowship for residents. The course will be held in Clearwater, Florida in January 2023. This intensive three-day course (developed using the proven methodology of The Penry Course for epilepsy) provides 36, second-year medical school residents from across the United States with instruction from an esteemed faculty of leading autonomic doctors. The curriculum for the course is designed to provide a comprehensive look at dysautonomia and features real-life case studies, interactive group activities, lectures, exams and more. Through The Resident’s Course, TDP predicts the number of doctors able to diagnose and manage autonomic disorders will be more than double in just the first year.

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 shared information about our current feedback practices.

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

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    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 look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback

Financials

DYSAUTONOMIA PROJECT INC
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Operations

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

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lock

Connect with nonprofit leaders

Subscribe

Build 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.

DYSAUTONOMIA PROJECT INC

Board of directors
as of 07/22/2024
SOURCE: Self-reported by organization
Board chair

Hunt Brand

Integris

Term: 2026 - 2024

Nate Freeman

Integris

Carlton Ward

MacFarlane, Ferguson & McMullen

Beth Pike

Karen Crown

Jason Jensen

Wannemacher Jensen Architects, Inc.

Susan Jinks

Coldwell Banker Real Estate

Al Ruechel

Kelly Freeman

John Hiers

Angela Hawkins

Crown Automotive Chairties/Hawkins Family Foundation

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? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • 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? Yes
  • 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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 7/22/2024
info Candid has made improvements to the race and ethnicity options.

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
Hispanic/Latino/Latina/Latinx
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

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: 07/22/2024

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 review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.