NATIONAL SPASMODIC DYSPHONIA ASSOCIATION

aka NSDA   |   Itasca, IL   |  www.dysphonia.org

Mission

The National Spasmodic Dysphonia Association (NSDA) dedicated improving the lives of people affected by spasmodic dysphonia and related voice disorders through research, education, awareness, and support.

Ruling year info

1990

Executive Director

Ms. Kimberly Kuman

Main address

300 Park Blvd Ste 175

Itasca, IL 60143 USA

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EIN

38-2918042

NTEE code info

Brain Disorders (G48)

Brain Disorders (H48)

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

Voice disorders like spasmodic dysphonia are challenging because they affect every aspect of a person's life from relationship to careers. We are trying to find answers into the cause of and a cure for spasmodic dysphonia and related voice disorders. Until answers are found, tools and support are needed to live more effectively with these vocal challenges.

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?

NSDA Research Programs

The NSDA is strongly committed to understanding the science of spasmodic dysphonia and related voice conditions and supporting research. Better treatment and ultimately a cure has always been a primary goal of the organization. Now, with a roadmap for research initiatives, there is a growing number of medical professionals interested in pursuing this research. What we do:

Fund seed research grants to new or established investigators for up to $50,000 per year. These can be for startup grants enabling successful applicants to subsequently seek funding from the National Institutes of Health or may provide partial support for post doctoral research training relating to voice conditions.

Provides travel grants to annual meetings of the various professional associations whose focus is voice, both for research and clinical advancement. By bringing investigators together to present their research on spasmodic dysphonia and related voice conditions, we are making connections that will help further their interest in voice conditions and ensure that it will continue to be an area of focus for future research.

Work with and support the Dystonia Coalition, a collaboration of medical researchers, scientists, institutions, patient advocacy organizations, that is funded by the Office of Rare Diseases and National Institute of Neurological Disorders and Stroke.

Consult with our Scientific Advisory Board composed of pre-eminent leaders in SD research along with a Medical Advisory Board that is comprised of leading clinicians in the fields of otolaryngology, speech pathology, and neurology. Collaborate with the National Institutes of Health (NIH) and other related organizations on innovative projects to better aid the SD community including co-sponsorship of research workshops.

Support a brain donation program to accelerate understanding of the neurological origin of SD. Published results from this research has shown changes in the white matter of the brain of people with SD, but we need more brain donors to help continue this research.

Population(s) Served

Where we work

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.

The NSDA is dedicated to improve the lives of people affected by spasmodic dysphonia and related voice conditions through programs of research, education, awareness and support. We do this through the advancement medical research into the causes of and treatments for spasmodic dysphonia, promoting physician and public awareness of the disorder, and providing support to those affected by spasmodic dysphonia.

The NSDA utilizes the following strategies to reach its goals:

RESEARCH: NSDA sponsors seed research grants with a rolling deadline to encourage applications all year round. Applications are reviewed by the NSDA Scientific Advisory Board led by Dr. Gerald Berke and comprised of some of the leading experts in the field. With these grants, we help investigators gather preliminary data so that they can apply to the National Institutes of Health for much larger funding. This type of investment allows us to support multiple projects and expand the understanding of spasmodic dysphonia and related voice disorders. The NSDA Research Travel Award program provides travel grant to annual meetings of the various professional associations whose focus is voice, both for research and clinical advancement. By bringing investigators together to present their research on spasmodic dysphonia and related voice conditions, we are making connections that will help further their interest in voice conditions and ensure that it will continue to be an area of focus for future research. The NSDA also works with researcher to assist with recruitment for clinical trials and partners with other dystonia organization to sponsor the Global Dystonia Registry and Dystonia Brain Collective.

AWARENESS AND EDUCATION. Raising the profile of spasmodic dysphonia in the public and reducing the time to diagnosis is critical to our organization. The many strategies of educating include: annual symposium, educational seminars, webinars, newsletters (both online and in-print), brochures, exhibiting at medical conferences, social media, and an expansive website.

SUPPORT. The NSDA has network of over 40 Support Groups and 240 Area Contact Persons led by volunteers who are living with spasmodic dysphonia. There is an annual Leadership Training Program for the volunteers along with a Support Network to provide guidance to our leaders. There is online support through a bulletin board and other social media outlets. New materials are developed to provide support and coping techniques.

The NSDA has been serving the spasmodic dysphonia community since 1989 which speaks to its longevity. The dedicated Board of Directors is comprised of all individuals with spasmodic dysphonia so they know personally the challenges of living with SD and the need to answers. The Founding President, Larry Kolasa, and original Board Member, Dot Sowerby, are still active members on the Board and many of the members have served for over 10 years.

The Scientific Advisory Board and Medical Advisory Board are leaders in the field and volunteer their time to support the Mission of the organization. Because this is a chronic disorder, many of the healthcare professionals have a long-term relationship with their patients and want to move forward the understanding of this voice disorder.

The NSDA has over 300 volunteers that serve in various capacities from support group leaders to social media ambassadors, all working collectively on the goals of the organization.

In addition, the NSDA staff is led by Executive Director Kimberly Kuman who has over 25 years of experience in the non-profit field and most of it exclusively in the field of dystonia. Additional part-time staff helps to ensure the administrative support.

Many of the accomplishments are listed above in the indicators of success. Creating and expanding our research program in one of the most important aspects of our organization. In addition, the NSDA is launching a completely revamped website in late 2019.

Future Goals include:
Increase the number of research grants funded
Continue to expand the NSDA Support Network
Utilize technology to expand support and education
Continue to create more awareness of about spasmodic dysphonia and related voice condition

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

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

  • 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,

  • What significant change resulted from feedback?

    Spasmodic dysphonia affects the ability to speak and under stress, a person's voice can become worse. We received a suggestion from one of our support group leaders to create a visor card that people could keep in their car and can be handed to a police officer if they are pulled over. This would help explain why their voice may sound impaired. We took this suggested anad created the card and it is available at no charge.

  • With whom is the organization sharing feedback?

    Our staff, Our board,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

NATIONAL SPASMODIC DYSPHONIA ASSOCIATION
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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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  • Analyze a variety of pre-calculated financial metrics
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  • Compare nonprofit financials to similar organizations

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NATIONAL SPASMODIC DYSPHONIA ASSOCIATION

Board of directors
as of 12/7/2019
SOURCE: Self-reported by organization
Board chair

Mr. Charlie Reavis

Larry Kolasa

Mary Bifaro

Dot Sowerby

Marcia Sterling

Charlie Womble

Charlie Reavis

Susan Beck

Marcia Sterling

Jane Gordon

Bev Matthews

Warren Bandel

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