The Amyloidosis Speakers Bureau (ASB) is directed by an operating committee of volunteers, the majority of whom are amyloidosis patients. We collaborate as a team with respect and ethics, and act with a shared purpose.
Mackenzie Boedicker, Member & Patient
“The reason I love the ASB so much is the fact that it has the ability to make an impact in the lives of the next generation of amyloidosis patients and their families. I envision a world where amyloidosis of all types is diagnosed so early, that the consequences we currently face are non-existent. I believe that in conjunction with other efforts in the community, the ASB has the power to bring about that change.”
Lane Abernathy, Member & Patient
“My own experience searching for a diagnosis, for physicians who knew about hereditary transthyretin amyloidosis, and for information about the disease was frustrating, discouraging, and exhausting. As the experts say, you will never find amyloidosis if you do not look for it. Being able to suspect and recognize it can lead to early diagnosis and treatment, a real game changer! How better to help these developing medical professionals consider the disease in their future practices than by hearing patients stories of life with it. What an exciting and hopeful mission!”
Deb Boedicker, Member & Caregiver
“What got me excited about this important initiative was the focus on educating the all-important front-line doctors, who span a wide spectrum of specialties, and will have the ability to diagnose this disease much earlier than at present. This singular change, which will advance the introduction of treatment, will have a monumental impact on improving patient outcomes (survival).”
Charolotte Raymond, Member & Patient - In Honorarium
“I have always been about ‘making a difference,’ so when I was asked to speak to second-year medical students at the Tufts University School of Medicine, I jumped at the chance. The presentation went better than we could have hoped, receiving great student response. I was hooked. I knew this was THE way we could make a REAL difference in the future of amyloidosis.”
We are saddened that Charolotte Raymond, our visionary co-founder, passed away on March 9, 2021.
