Disease, Disorders, Medical Disciplines

TMJ Association, Ltd.

  • Milwaukee, WI
  • www.tmj.org

Mission Statement

The TMJ Association's mission is to improve the quality of health care and lives of everyone affected by Temporomandibular (jaw) Disorders. We envision a future where individuals with Temporomandibular Disorders will receive a timely and accurate diagnosis, followed by high-quality comprehensive medical care, and safe and effective treatment, that is informed by the latest and most rigorous scientific evidence.

Main Programs

  1. Educational Outreach
  2. TMJ Nutritional Guide
  3. Professional video about TMD
  4. Dental Care Guide
  5. Chronic Pain Research Initiative
  6. TMJA's 8th Science Meeting
Service Areas

Self-reported

International

We serve people in the United States as well as others who contact from outside the U.S.

ruling year

1991

Principal Officer since 1989

Self-reported

Ms. Terrie Cowley

Co-founder and Director, Chronic Pain Research Alliance Initiative since 2015

Self-reported

Ms. Christin Veasley

Keywords

Self-reported

jaw, TMJ, TMJD, pain, women, temporomandibular, chronic pain

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EIN

39-1691109

 Number

1432274740

Physical Address

13625 Bishop's Drive, Suite 101

Brookfield, WI 53005 6607

Contact

Cause Area (NTEE Code)

Alliance/Advocacy Organizations (G01)

Nerve, Muscle and Bone Diseases (G50)

Diseases of Specific Organs (G40)

IRS Filing Requirement

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

Programs + Results

How does this organization make a difference?

Overview

Self-reported by organization

There continues to be a dearth of scientific understanding of the etiology of Temporomandibular Disorders (TMD), their diagnosis, comorbidities and treatment. The TMJ Association's work and advocacy efforts have been critical to leading the paradigm shift in research from TMD as solely as a localized orofacial pain condition to a complex multisystem disorder with overlapping comorbidities and extensive scientific literature. The Associaton continues to promote awareness of TMD disorders among the public, research and healthcare communities, connecting TMJ patients for one-on-one support, encouraging basic and clinical research, and safer and more effective methods of diagnosis and treatment, collecting and disseminating information on the advances of research and treatment, and advocating for patients' rights by communicating with elected officials, government agencies and others in policy making capacities at the national, regional and local level.

Programs

Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Program 1

Educational Outreach

The TMJ Association will develop new educational materials to help people understand the impact of TMJ disorders on society which will promote support for more scientific research.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Females, all ages or age unspecified

Female Youth/Adolescents (14 - 19 years)

Female Youth/Adolescents (14 - 19 years)

Budget

$15,000.00

Program 2

TMJ Nutritional Guide

We are currently seeking funding to support the production and distribution of this vital educational nutrition booklet which will include healthy, balanced recipes and food lists designed specifically to meet the unique nutritional needs of TMD sufferers.  Consequently, in order to address the critical deficiency in appropriate and available dietary information adapted to TMDs, TMJA has recently embarked upon this new project in collaboration with Patti Cobb, RD, CD, Chief Clinical Dietitian and Dena Mcdowell, MS, RD, CD, Registered Dietitian, both of whom are associated with the Food and Nutrition Services at Froedtert Memorial Hospital in Milwaukee, Wisconsin, a teaching institution affiliated with the Medical College of Wisconsin.

Category

Food, Agriculture & Nutrition

Population(s) Served

Females, all ages or age unspecified

Adults

Female Youth/Adolescents (14 - 19 years)

Budget

8,000

Program 3

Professional video about TMD

Create several 1-2 minute professional videos to put a personal face on these poorly understood and often chronic and debilitating pain conditions that continue to go unnoticed in our society.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Adults

Young Adults (20-25 years) -- currently not in use

None

Budget

$40,000.00

Program 4

Dental Care Guide

Update and expand the TMJ Association’s brochure, Dental Care Guide for TMD. The TMJ Association intends to print 5,000 copies for distribution. The brochure will provide much-needed guidance to TMD patients for general dental care when dealing with painful TMD symptoms.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Adults

Young Adults (20-25 years) -- currently not in use

None

Budget

8,000

Program 5

Chronic Pain Research Initiative

Chronic Pain Research Alliance (CPRA) is working collaboratively across all necessary sectors to drive a comprehensive, rigorous and coordinated effort to advance our understanding of the risks, causes, mechanisms and treatments of chronic overlapping pain conditions (COPCs). We seek to translate novel research findings into educational programs for clinicians and patients and drive therapeutic development for COPC treatment (therapies that work across multiple conditions.) As the country’s first and only research-led collaborative advocacy effort dedicated to addressing these specific chronic overlapping pain conditions (COPCs), we work with a variety of invested stakeholders - leaders from the clinical and scientific community, patients, advocacy organizations, industry and federal health research and policy agencies – to improve the lives of millions of pain sufferers worldwide.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Female Adults

Adults

Budget

120,000

Program 6

TMJA's 8th Science Meeting

The Eighth Scientific Meeting of The TMJ Association - How Can Precision Medicine Be Applied to Temporomandibular Disorders and its Comorbidities?

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Female Adults

Adults

Budget

$112,000.00

Charting Impact

Self-reported by organization

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

  1. What is the organization aiming to accomplish?
    We envision a future where individuals with Temporomandibular Disorders will receive a timely and accurate diagnosis, followed by high-quality comprehensive medical care, and safe and effective treatment, that is informed by the latest and most rigorous scientific evidence.
  2. What are the organization's key strategies for making this happen?
    We achieve our mission by advocating for the needs of TMJ patients, promoting awareness of temporomandibular disorders among the public, policy makers, research and health care communities, connecting TMJ patients with those who can provide knowledgeable support and empathetic understanding, encouraging basic and clinical research, periodically convening international scientific meetings, serving as a resource for the collection and dissemination of information on advances of research, treatment, insurance practices, patient's rights, and legal and ethical issues, and communicating with elected officials, government agencies, professional organizations, community leaders and other policy makers concerning TMD issues.
  3. What are the organization's capabilities for doing this?
    The TMJ Association is led by Terrie Cowley, a TMJ patient and co-founder. Terrie's enduring work and dedication has been instrumental in increasing awareness of the needs of Temporomandibular Disorders (TMD) patients among key groups, including the public, patients, health care providers, policy makers, Congress, the NIH and media. Through her leadership the Association works toward its goal to establish safe and effective means of diagnosis, treatment and ultimately, prevention of TMD.

    Christin Veasley is the Director and Co-Founder of the TMJ Association's Chronic Pain Research Alliance Initiative. Chris has spent her career advocating for rigorous multidisciplinary pain research. She currently serves as a member of several other collaborative alliances, federal committees/initiatives, and public-private partnerships working to promote pain research, education, treatment and prevention. She is the former Executive Director of the National Vulvodynia Association.

    For over 25 years, the TMJA has communicated with thousands of TMD patients over the years and has firsthand understanding of their needs and concerns. The TMJA benefits from a prestigious Scientific Advisory Board for collaboration and consultation. The TMJA has received a number of grants over the past decade from the National Institutes of Health and other health related foundations and has co-sponsored seven international scientific meetings on TMD.
  4. How will they know if they are making progress?
    The TMJA regularly assess the state of science by reviewing the NIH grant portfolio for Temporomandibular Disorders and reviews the quality of science being funded toward these disorders. Additionally, the TMJA continuously monitors the scientific literature for gaps and advances in research. The TMJA annually survey's its stakeholders for their feedback on their current needs, concerns as well as input on future activities of the TMJA. All of this information helps the TMJA refines its efforts.
  5. What have and haven't they accomplished so far?
    The TMJ Association (TMJA) has co-sponsored seven scientific meetings with the National Institutes of Health (NIH) resulting in recommendations that set the direction for future Temporomandibular Disorders (TMD) research and NIH funding opportunities. These meetings have been critical to leading the paradigm shift in research from TMD as solely as a localized orofacial pain condition to a complex multisystem disorder with overlapping comorbidities.

    The TMJ Association has also adopted the The Chronic Pain Research Alliance (CPRA) as one of its many programs and initiatives. This initiative will expand our existing efforts as we continue to listen to the patients. Scientific research today indicates that the vast majority of TMD patients suffer from other pain conditions addressed by CPRA, furthering TMJA's commitment to addressing the spectrum of medical issues faced by TMD patients.

    The TMJA has had over 20 consecutive years of advocacy efforts which have resulted in report language. Report language tells agencies of the NIH that elected officials are concerned about specific issues. This directive has a powerful influence on the decisions made by the government agencies. The TMJA has established personal contacts with staff and elected officials, and have garnered their support by reporting regularly on TMD research, as well as letting them know what we, the patients, need. The U.S. Congress remains vigilant to the needs of the TMD patients as well as to the progress the NIH has and continues to make on their behalf.

    We will continue our efforts until individuals with Temporomandibular Disorders and chronic overlapping pain conditions receive timely and accurate diagnosis, followed by high-quality comprehensive medical care, and safe and effective treatment, that is informed by the latest and most rigorous scientific evidence.
Service Areas

Self-reported

International

We serve people in the United States as well as others who contact from outside the U.S.

Social Media

Blog

Videos

External Reviews

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Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

TMJ ASSOCIATION LTD
Fiscal year: Jan 01-Dec 31
Yes, financials were audited by an independent accountant.

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Operations

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

TMJ Association, Ltd.

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2015, 2014 and 2014
  • Board Chair and Board Members
  • Access to the GuideStar Community
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Principal Officer

Ms. Terrie Cowley

Co-founder and Director, Chronic Pain Research Alliance Initiative

Ms. Christin Veasley

BIO

Terrie Cowley is the co-founder and President of The TMJ Association, Ltd., in Milwaukee, Wisconsin, and a TMJ implant patient. Ms. Cowley's enduring work and dedication has been instrumental in increasing awareness of the needs of TMJ patients among key groups, including policy-makers, the media, Congress, and the National Institutes of Health (NIH) community. Through her leadership, the Association works toward its goal to establish safe and effective means of diagnosis, treatment, and ultimately prevention of temporomandibular disorders (TMD). Ms. Cowley has fulfilled a variety of roles at the Association during the past 15 years. She works directly with patients and their families to provide support, counsel, and information. As the official spokesperson for the Association, Ms. Cowley is a powerful voice for patients and their families to the media, policy-makers, and researchers. She is the leading advocate in Washington and was instrumental in triggering the Congressional hearing of June 4, 1992 entitled: "Are FDA and NIH Ignoring the Dangers of TMJ Implants". That hearing first revealed the pitiful state of TMJ science and led to significant national media coverage including The Wall Street Journal, 20/20, Women's Day, and American Journal. In recent years Ms. Cowley contributed to and was quoted in articles appearing in USA Today, U.S. News and World Report, Dallas Morning News, HLB Newsletter, Proto - Massachusetts General Hospital Dispatches from the Frontiers of Medicine, and Dental Abstracts.

STATEMENT FROM THE Principal Officer

""I look forward to continuing the important work of the CPRA, in partnership with the many important stakeholder groups and advocates needed to accelerate scientific research and safe and effective treatment for those suffering from chronic overlapping pain conditions.""

Governance

BOARD CHAIR

Donald M. Birk CFPIM, CIRM

No Affiliation

Term: July 2008 - July 2011

BOARD LEADERSHIP PRACTICES

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices. Self-reported by organization

Yes

BOARD ORIENTATION & 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?

Yes

ETHICS & 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?

No

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?


ORGANIZATIONAL DEMOGRAPHICS

In order to support nonprofits and gain valuable insight for the sector, GuideStar worked with D5—a five-year initiative to advance diversity, equity, and inclusion in philanthropy—in creating a questionnaire. This section is a voluntary questionnaire that empowers organizations to share information on the demographics of who works in and leads organizations. To protect the identity of individuals, we do not display sexual orientation or disability information for organizations with fewer than 15 staff. Any values displayed in this section are percentages of the total number of individuals in each category (e.g. 20% of all Board members for X organization are female).

Gender
Race & Ethnicity
Sexual Orientation

This organization reports that it does not collect this information for Board Members and Full-Time Staff.

Disability

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

Diversity Strategies
No
We track retention of staff, board, and volunteers across demographic categories
No
We track income levels of staff, senior staff, and board across demographic categories
No
We track the age of staff, senior staff, and board
No
We track the diversity of vendors (e.g., consultants, professional service firms)
No
We have a diversity committee in place
No
We have a diversity manager in place
No
We have a diversity plan
No
We use other methods to support diversity