For 20 years, ACCRF has been an organization founded by and for patients, and driven by the needs of those patients. We believe that ACCRF and ACC research are only as strong as the individuals who make up our community. Education and connection are central to our mission, and we strive every day to provide new information, resources, and a sense of community for people living with ACC.
From early in our history, Patient Meetings have been an essential part of this mission. Because of its rarity, many patients have never met another person with ACC, and we understand how important interpersonal connections are to bolstering the health, wellbeing, and hope necessary for living with ACC. Patient Meetings bring people together to share their experiences and support one another through the unique challenges of this disease, providing the hope that comes from knowing others have weathered the same difficulties and are continuing to thrive.
These gatherings also offer an opportunity to learn about the entire research landscape at ACCRF, from basic science to the latest breakthroughs in research and clinical trials, and to see just how important patients are to the work of ACCRF. By sharing this information, we not only aim to educate patients so they can make informed decisions about their care, but to show that this research is our greatest ongoing source of hope, and that the future of ACC treatment is more promising than ever.
The first-ever ACCRF Patient Meeting was held on April 8, 2008 at the home of ACCRF co-founders Marnie and Jeff Kaufman. This small but mighty gathering of 14 (pictured above) laid the foundation for what would become one of the central pillars of the ACC patient community and kicked off one of ACCRF’s longest-running initiatives. In thinking about the impetus for the first Patient Meeting, Marnie Kaufman said, “especially back then, it was incredibly difficult to find other people who were going through the same thing I was with ACC. It was so important to us that we were not only supporting new research, but also supporting patients and creating opportunities to feel less alone in our journeys.”
Since that first meeting in 2008, ACCRF has hosted or supported over 20 Patient Meetings across the country, from local patient-led gatherings to our annual event in Needham, Massachusetts. We have also been fortunate to be joined at many of our meetings by top ACC researchers and physicians who have shared the latest in science and treatment and have answered questions directly from patients. Not only has their presence facilitated great discussions and greater understanding, they have helped further strengthen the bonds between patients and researchers.
We are so grateful to the many patients, family members, friends, caretakers, researchers, and physicians who have made our Patient Meetings an indispensable part of ACCRF’s history and future. Those who have shared their time, their stories, and their hope give us all courage to continue to work towards a better future and a cure.
We thank you all. You are ACCRF.
