By Anneliese Dickman 07/10/2013
The Avielle Foundation’s objectives are twofold: promoting and supporting research on brain health to prevent violence and building community to foster connectivity and empathy. This two-pronged approach to better health has been shown to be successful by many other wellness advocacy organizations, all of whom owe a debt to Nancy Brinker, founder of Susan G. Komen for the Cure. She created an organization that has raised a tremendous amount of money for research, but to do so she first brought breast cancer out of the shadows by helping families, health care providers, and the media shine a light on the disease and its effects.
At the time of Komen for the Cure’s first fundraiser, in 1982, the local reporter covering the event struggled to convince her editors that her news story should include the word “breast” and not just refer to some unnamed “women’s cancer.” This reluctance to acknowledge female biology was typical, and meant that women and their families suffered in silence. Survivors were afraid to reveal the scars of breast cancer on their bodies, and those that had lost loved ones could not truly describe their mothers’, sisters’, or daughters’ suffering for fear of offending. If cancer was a word whispered in polite company, breast cancer was not uttered at all.
Nancy Brinker realized that raising enough money to find a cure could happen only if society was comfortable talking about breast health. She sought media attention for her work; cultivated support from high-profile women like Betty Ford and Happy Rockefeller, who had been open about their diagnosis and treatment; and advocated loudly for breast cancer, as the number two killer of women, to become a priority of policymakers and cancer researchers. She had facts and figures on her side, and coupled the statistics with personal stories from women across the country.
In addition, she ensured that the foundation’s work was inclusive of all types of breast cancer patients, from all walks of life (including men). She knew that the pervasiveness of the disease, while devastating, was also the aspect that could ensure the foundation’s success. She felt there was literally no one who did not fit the profile of a potential foundation supporter, because there was literally no one who did not potentially have someone in their life affected by breast cancer. In the early days of the foundation, she found it possible to work a pitch for a contribution into every conversation she had.
Komen for the Cure’s extraordinary success in creating awareness has resulted in over $1.5 billion raised in the past 30 years. The research supported with these funds has helped to answer questions about how cancer works, why certain women are at risk, and what can be done to prevent increased risk. Nancy Brinker was able to personalize the benefits of this investment, by making a direct link from the culture to the clinic: You share your experience, we rally around you as a community, we work together to raise funds for research, physicians use research findings to improve patient outcomes, more people live healthier lives, and fewer people lose loved ones.
The parallels between society’s attitudes toward breast health in the early 80s and brain health in 2013 are striking. Just as then, families now are suffering in silence and isolation; negative outcomes are rippling across entire communities; funding for research is disproportionately low as compared to the number of people affected; people choose not to see the potential for their own lives to be disrupted; and the what, why, and how questions about the sources of violence are unanswered.
The Avielle Foundation seeks to change the culture around brain health. If we aim to end senseless violence, families must feel safe speaking about the impact of brain illness and behavioral problems on their lives. Their friends and neighbors must embrace these families and become their advocates. Researchers must have the intellectual and financial freedom to explore the connections between biology and aggression. Health care providers must have effective tools to prevent and intervene. And everyone who goes through life untouched by violence must consider themselves beneficiaries of greater investment in brain science.
Anneliese Dickman is a policy researcher and author in Milwaukee, WI. Formerly the research director of the 100-year-old, non-partisan Public Policy Forum, her current policy projects focus on childhood firearm injury prevention, the benefits of high quality early childhood education, and mitigating the impacts of child abuse and neglect. She holds a BS in chemistry from the Massachusetts Institute of Technology and a JD from the University of Denver Sturm College of Law.