PLATINUM2023

MdDS Balance Disorder Foundation

Dedicated to finding the cause and cure for MdDS.

aka MdDS Foundation   |   Audubon, PA   |  www.mddsfoundation.org

Mission

The mission of the MdDS Foundation is to promote education and research on the neurological disorder Mal de Débarquement Syndrome (MdDS). An all-volunteer 501(c)(3), the MdDS Foundation promotes international awareness of MdDS while advocating for those living with MdDS and seeking treatments and a cure for people suffering from this rare disorder.

Ruling year info

2007

Principal Officer

Mrs. Marilyn Josselyn

Main address

22406 Shannondell Drive

Audubon, PA 19403 USA

Show more contact info

EIN

20-5953110

NTEE code info

Brain Disorders (G48)

Fund Raising and/or Fund Distribution (E12)

Fund Raising and/or Fund Distribution (H12)

IRS filing requirement

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

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The MdDS Foundation promotes international awareness of Mal de Débarquement Syndrome (MdDS), a chronic neurological disorder causing the feeling of rocking and swaying. We advocate for and seek treatments to end the suffering from MdDS.

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?

Development of a Telemedicine Approach for the Treatment of MdDS

Research to be conducted by Dr. Brian Clark, PhD at Ohio University.

Population(s) Served
Adults

Dr. Yoon-Hee Cha continues her investigations into a cause of and a cure for MdDS. Programs were impacted by pandemic related restrictions.

Population(s) Served

In an effort to identify new researchers and to expand our outreach to more professional organizations the MdDS Foundation is planning a collaboration with the American Brain Foundation and the American Academy of Neurology.

Population(s) Served
Health
Health

The MdDS Foundation has partnered with Patient Worthy to identify articles about MdDS in a timely manner.

Population(s) Served

The MdDS Balance Disorder Foundation is a long-standing member of the American Brain Coalition, ABC. The ABC is dedicated to supporting research and awareness of those living with neurological syndromes.

Population(s) Served
People with diseases and illnesses

Where we work

Affiliations & memberships

American Brain Foundation 2021

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 list subscribers

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults, Caregivers

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Twitter, Instagram, and Facebook followers receive notification of new blog posts, timely updates, and breaking news. View our profile page @mddsfoundation on all platforms.

Number of stories successfully placed in the media

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context Notes

These include organic and earned mentions in larger print and broadcast media only. Niche media is not measured. A select listing of media placements is available at https://mddsfoundation.org/media/

Number of website pageviews

This metric is no longer tracked.
Totals By Year
Related Program

Research Collaboration with American Brain Foundation and AAN

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The sharp uptick in views may be due to post-pandemic travel resulting in people seeking information on the symptoms of MdDS.

Number of people on the organization's email list

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Patients and medical professionals receive our newsletters which relay important updates and announcements. Find archived newsletters here. http://bit.ly/mddsnewsletters

Number of Facebook followers

This metric is no longer tracked.
Totals By Year
Population(s) Served

Family relationships, Health

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

MdDS Friends. With 2 billion people using Facebook, our Community Page is an ideal tool for worldwide education on MdDS. Like and follow our page at www.facebook.com/mddsfoundation.org/

All-Star Donors

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

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Recurring donations are vital to on-going research. Learn more ways your donations help at https://mddsfoundation.org/donate/

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.

1. To provide support and education for patients and families of those with this rare disorder. 2. To facilitate clinical studies designed to improve the diagnosis and treatment of MdDS. 3. To promote basic and clinical research to better understand the cause(s) of this unique syndrome. 4. To collect, collate, and distribute demographic and other information from those with MdDS via online surveys. 5. To update professionals who provide medical care and treatment to MdDS patients.

The MdDS Foundation website is the most comprehensive site in the world for information on the disorder. We offer an online support group designed to enable patient-to-patient dialogue and provide coping support for one another. In addition, the MdDS Foundation has created the largest database in the world of physicians that are familiar with the disorder. The MdDS Foundation directs 96% of proceeds to enabling clinical research studies and to campaigns which create additional awareness and support for both patients and physicians.

The MdDS Foundation has a very active and engaged board that is fully committed to the mission and goals of the Foundation. To that end, the Foundation has raised over $2,000,000 in support of this cause.

We have raised over $2,000,000 to support our mission and goals, building on the successes we have achieved and supporting on-going efforts. We have recently launched a new website, YouTube educational video and created a new informational brochure. In addition, we added an active Instagram page. In 2021 Board members attended virtual meetings including the Pre-Meeting of the International Barany Society in which Mal de Debarquement Syndrome. and participated in the Rally for Research to encourage Congress to include funding for research and awareness fo rare and underdiagnosed syndromes.

Financials

MdDS Balance Disorder Foundation
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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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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.

MdDS Balance Disorder Foundation

Board of directors
as of 02/24/2023
SOURCE: Self-reported by organization
Board chair

Mrs. Marilyn Josselyn

no affiliation

Term: 2009 -

Marilyn Josselyn

no affiliation

Terri Gibson

no affiliation

Linda McManus, PhD

no affiliation

Deb Russo

no affiliation

Holly Balog

no affiliation

Tyler McNeil

no affiliation

Ruth Goldblatt, DMD

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? No
  • 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? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Not applicable
  • 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 1/25/2022

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
White/Caucasian/European
Gender identity
Female

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

No data