Colin Farrell’s New Foundation: A Powerful Reminder of Advocacy’s Roots
Over the past couple of weeks, the media was filled with articles and clips of actor Colin Farrell. He wasn’t promoting a new movie this time, but bringing his considerable star power to the launch of the Colin Farrell Foundation, which will provide support through advocacy, education, and innovative programs for families and individuals like Farrell’s 20-year-old son, James, who are living with intellectual disabilities.
James has Angelman Syndrome, a rare genetic disorder presenting in infancy that impacts the nervous system. Early intervention and specialized support can aid development, but individuals with Angelman Syndrome often need lifelong care, with needs and requirements that change as children reach adulthood. Beyond the medical transition, these individuals often require educational, emotional, practical, and social adaptations as well, underscoring the needs for dedicated resources and guidance that are unfortunately not being met.
These areas of great unmet need are where foundations and organizations play a critical role in our society. Many foundations and nonprofits are born from the personal experience of patients and families: Colin Farrell started his foundation upon realizing, as his son reached young adulthood, that there was a severe lack of institutional and governmental support and services for people living with intellectual disabilities, resulting in “multiple crises that have deleterious effects on their health and well-being.” (Colin Farrell Foundation)
Other nonprofits and foundations step in to fill similar gaps that arise to varying degrees across therapeutic areas: in research, in education, in support, in policy advocacy, the list goes on. Some are disease-specific—the Angelman Syndrome Foundation, for example—while others, like Farrell’s, focus on a specific need or issue that crosses therapeutic areas.
The variety of groups and their approaches speaks to the many dimensions of the patient experience. And the founding of the Colin Farrell Foundation reflects what we hear so often from patients: people are more than just their disease, and a diagnosis affects the whole family. To truly support patients and to help a community make progress against a disease requires more than star power or even new therapies—although those can make a tremendous difference. It requires each of us working in this space to broaden our own perspectives to understand the lived experience of a disease, to consider the ramifications of both disease and treatment, and to grasp the full spectrum of needs that have to be met in order for patients and families to receive the greatest benefit from the healthcare advances we are all seeking.
