The TMJ Association, Ltd., (TMJA) was founded in August 1986 in Milwaukee, Wisconsin, by Terrie Cowley and Sandra Geilfuss, both sufferers of TMD. As there was little information readily available on TMD, their intent was to establish a support group to provide a forum for the exchange of experiences, information, understanding and emotional support for TMJ patients.
In December 1989, the TMJA was established as a nonprofit corporation under the laws of the State of Wisconsin with a 501(c)(3) status. The 501(c)(3) status exempts the TMJA from federal and state income taxes and allows the organization to offer tax benefits to individuals who make contributions. The organization established an all-volunteer Board of Directors and an all-volunteer Scientific Advisory Board to provide technical insight into the complex TMD. The founders of the Association began their search for knowledge of TMD because of their own experiences with treatments. They met with many of the professional practitioners treating this problem in the Milwaukee area in order to gain insight into current treatment approaches. Then they broadened their quest to learn how other patients were faring. The new patients shared their stories and hopes for finding solutions to the problems that compromised the quality of their lives. From the variety of experiences, it became apparent to the TMJA founders that there were a multitude of problems and no consistently reliable solutions available. The founders realized that valid scientific studies regarding TMD were needed to move forward.
To initiate scientific studies for a condition, there needs to be recognition in the medical and scientific communities of the seriousness of the problem, a willingness by researchers to tackle the problem and funding to support the studies. To build its case for research, the TMJA began by conducting searches of all available literature on TMD and then soliciting opinions on that literature from scientists.
The TMJA expanded its efforts as it learned more. A newsletter was created to share information as well as solicit input from readers. Targeted surveys of patients were conducted. The committed TMJA staff collected and organized the ideas and stories they heard from patients.
Then the TMJA staff began contacting government agencies such as the National Institute of Dental and Craniofacial Research (NIDCR) and the Food and Drug Administration (FDA). Through these contacts they learned about funding for studies and actions in regards to issues such as defective implant devices (Class I recall of the Vitek TMJ implant). They also contacted the American Dental Association and The American Association of Oral Maxillofacial Surgeons to obtain information regarding their activities to ensure the safety of TMJ patients.
With the information and knowledge they obtained, the TMJA staff began contacting and presenting evidence to federal government committees and agencies such as the National Institutes of Health (NIH). The Association took a more active role with its sponsorship of the first TMJA patient meeting in Washington D.C. that included representatives from NIH Institutes and the FDA. The TMJA’s presence and participation at such events was significant because the problems of TMJ patients were now being reported to government agencies that had the power and influence to advance research. On the other hand, it was disheartening for Association staff to find out how little TMJ science existed and the lack of scientific basis behind approaches currently being used for diagnosis and treatment.
It wasn’t until 1996 at the National Institutes of Health Technology Assessment Conference on Management of Temporomandibular Disorders that the Chairman of the NIH committee admitted that they were dealing with problems that had no clear diagnosis and no clear guidelines for diagnosis and treatment. Patients and practitioners were basically experimenting with inadequately tested treatment approaches.
Once the lack of scientific evidence was acknowledged, the long hard work could begin. Receiving approval and acquiring funding for research studies is just the beginning. Studying conditions and identifying solutions can take years–even decades. What was important was that progress was being made. In late 1997, one of the first groups of researchers received $1.5 million in funding from the NIDCR to study the basic science of TMD.
Congress was getting involved too. Beginning in the mid-90s, the Senate began issuing Report Language regarding TMD at the request of the TMJA. In the late 90s, the House of Representatives joined the call. Report Language is important because it tells the NIDCR that TMD is receiving the attention of elected officials who expect the NIDCR to show concrete evidence of addressing these issues through research. TMD now had the attention of many in the US Congress.
Meanwhile, the TMJA continued its outreach to TMD patients. The newsletter was redesigned to be more patient-focused and the TMJA website was introduced. The website provided easier access for patients from across the country and also began drawing an international audience, as there was no worldwide organization dedicated to the problems and needs of TMD patients. The TMJA also developed its first database with 9,000 patient names.
The problems of TMD patients began to gather more attention and the TMJA was being recognized as an authority in the media.
The TMJA was cited in publications including: USA Today, The Washington Post, The New York Times, Health Magazine, Women’s World, and US World News & World Report.
The TMJA launched its first national public awareness campaign with an appearance on Good Morning America and also appeared on CNN.
The ultimate goal for this type of publicity was to draw attention to the need for more research. In conjunction with its awareness campaign, the TMJA sponsored its first basic science meeting in May 2000. The meeting brought together over 30 scientists in genetics, neuroscience, rheumatology, endocrinology, immunology and tissue engineering. The group assessed the current status of TMJ research and where they wanted to take it. This meeting was the basis for subsequent annual meetings to assess and evaluate research efforts regarding TMD.
The TMJA continued its work in garnering attention and encouraging more research. More research opportunities became available to scientists and investigators through the NIH and the NIDCR. The TMJA has sponsored eight scientific meetings in conjunction with the NIH aimed at expanding the base of TMJ science and making recommendations for further research. As an outgrowth of these efforts, there is now consensus in the scientific community that TMD represent a complex family of conditions influenced by genetics, sex, and environmental and behavioral triggers.
One of the most significant changes during this time is that scientists have determined that TMD is best studied with a systems approach in which investigators from many disciplines work as a team, exploring all aspects of the disorder from genes and molecules to the whole person living in an environment. The systems approach has scientists focusing on the underlying chronic pain conditions which often coexist with TMD including: chronic fatigue syndrome, chronic headache, endometriosis, fibromyalgia, irritable bowel syndrome, interstitial cystitis and vulvodynia. Realizing there is strength in numbers, the Endometriosis Association, National Vulvodynia Association, CFIDS Association, and TMJ Association have come together to form the Chronic Pain Research Alliance, whose advocacy for research led in 2012 to the first-ever NIH-sponsored workshop on overlapping pain conditions with the aim of developing a research agenda.
In 2016, by acting as a catalys, TMJA developed the first patient-led, patient-centered project conducted under the auspices of the Medical Device Epidemiology Network (MDEpiNet) - the TMJ Patient-Led RoundTable. The RoundTable is a public-private collaboration among the federal governemnt, scientists, clinicans, dentists, patients, advocates and manfacturers that aims to establish a scientifically valid roadmap to reliably predict treatment outcomes for individual patients.
As a result of the TMJA’s tireless advocacy efforts, in 2019, the prestigious National Academy of Medicine (NAM) undertook the first study of TMD, entitled Temporomandibular Disorders: From Research Discoveries to Clinical Treatment. It is the first and only study to date to examine the entire continuum of TMD – research, education and training, diagnosis and assessment, clinical management and treatment, treatment efficacy, models of care, insurance practices and clinical translation, among others. As the nation’s source of nonpartisan, objective guidance for decision-makers, the NAM is a prestigious voice positioned to make lasting and transformational recommendations to advance areas like TMD, which have been historically plagued with a siloed, non-evidence-based approach. The NAM report recommendations, combined with the TMJA’s long-standing history of convening stakeholders with diverse expertise and viewpoints, provides a ripe opportunity to revolutionize this field and actualize change across multiple stakeholder groups and siloes. With implementation of the NAM study recommendations, our vision for the future of TMD patient care can actually become a reality – a health care system that is informed by evidence and addresses the complexity of TMD patients with an individualized, patient-centered, whole-body approach.
We are hopeful that these efforts will bring about treatments to help the sufferers of this chronic disease in our next era.