DYSAUTONOMIA PROJECT INC
Educate, Advocate, Empower
Mission
The mission of The Dysautonomia Project (TDP) is to educate healthcare professionals, patients and communities about dysautonomia.
Ruling year
2014
Founding Director
Kelly Freeman
Main address
4592 Ulmerton Road Suite 104
Clearwater, FL 33762 USA
EIN
46-5433260
NTEE code
(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
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
What are the organization's current programs, how do they measure success, and who do the programs serve?
Advancing Autonomic Medicine for Residents
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. 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 only 51 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.
Where we work
External reviews
Photos
Videos
Our results
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
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?
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.
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
What have they accomplished so far and what's next?
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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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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DYSAUTONOMIA PROJECT INC
Board of directorsas of 07/20/2023
Angela Hawkins
Dwayne Hawkins Family Foundation
Term: 2025 - 2023
Nate Freeman
Network People
Carlton Ward
MacFarlane, Ferguson & McMullen
Beth Pike
Karen Crown
Hunt Brand
Network People
June Bryant
University of Tampa
Terry Igo
Tampa Bay Trust Company
Jason Jensen
Wannemacher Jensen Architects, Inc.
Susan Jinks
Coldwell Banker Real Estate
Al Ruechel
Susan Rolston
Big Brothers Big Sisters of Tampa Bay
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? No -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? No -
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? No -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? No
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
No data
Gender identity
No data
No data
Sexual orientation
No data
Disability
No data
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