History of the American Brain Coalition
In March 2000, the One Voice Neurological Coalition was launched by the American Academy of Neurology (AAN) and over 50 professional and patient organizations. The One Voice coalition has evolved into the American Brain Coalition (ABC) to encompass a broader membership. The intentions of One Voice were to bring together representatives of patient advocacy organizations, physician organizations, and other related groups that focus on the prevention, study, treatment, and cure of brain and neurological diseases and disorders. Leveraging the combined resources of member organizations can improve the quality of life for all people affected by brain and nervous system diseases and disorders. Moreover, creating a dialogue between patients and providers that focuses on patient needs across diseases can lead to changes in the training and education of health care providers, legislation in support of chronic care needs, and improved treatment for patients.
Further meetings helped the coalition refine its mission, vision, and goals. Coalition members determined that broadening its scope to include neurosurgeons, psychiatric professionals, and mental health organizations would be more inclusive and present greater advocacy opportunities. With the assistance of the Society for Neuroscience (SfN), the organization renamed itself the American Brain Coalition in April, 2004 and incorporated as a non-profit group.
The Time Is Right for a Unifying Organization
The ABC is envisioned as a single umbrella organization for patient advocacy groups, scientific societies, and medical associations to join forces to advocate for biomedical research and other areas of common interest. As a unified organization, the ABC can have a greater impact on public policy affecting patients, families, and researchers than each individual organization could separately.
The ABC’s mission is to reduce the burden of brain disorders to individuals, families, and society. The vision for the ABC is to develop a strong and powerful voice for people with disorders of the nervous system by bringing together organizations that represent concerned and interested patients, families, and professionals to advocate for increased support of biomedical research
Francis I. Kittredge, Jr., MD, who was president of the AAN in 2000 and the driving force behind the coalition, explained the rationale for the organizational changes. “A 501(c)4 nonprofit organization [the nonprofit status the ABC has applied for] can contribute the vast majority of its efforts toward lobbying. Because advocacy and lobbying are the main focus of the coalition’s mission and vision, we wanted to establish an organization that could influence legislation affecting the patient, research, and clinical communities, but that would follow government rules for lobbying expenditures.”
Kittredge cited several reasons why the time is right for the coalition.
“First, the challenges and the opportunities facing biomedical research are unparalleled,” he said. “In this post budget-doubling era for the National Institutes of Health, much of Congress is not convinced that strong funding is still needed. Yet the explosion of new knowledge holds great promise for treatment of brain diseases and justifies additional funding support.
“Second, many of these diseases affect the aging population, which will double by 2030. Without effective preventive strategies and therapies, these diseases will impose an enormous economic and personal burden on patients, their families, and society.
“Third, each of the patient and medical communities has been engaged in advocacy and lobbying in their separate spheres with good success, but these communities are ready to branch out and join with other groups to strengthen and solidify the message of advocacy.”