Northern California Support Group Meeting and Patient’s Day Hosted by Prothena

“ Everything we do starts and ends with patients, so spending time with patients who are dealing with devastating diseases like AL or ATTR amyloidosis is central to our ability to keep these perspectives in mind. 

At Prothena, we focus on how our science can be translated into medicines for important diseases. We also love talking about our science, so hosting the ARC at Prothena for a support group meeting provided an incredibly rich learning opportunity and dialogue that we look forward to continuing.”  Sarah Noonberg, MD, PhD, Chief Medical Officer

The Northern California Amyloidosis Support Group which meets quarterly every year, held their 14th annual anniversary meeting in July in South San Francisco.  The event was hosted by the team at Prothena and was a very successful Patient’s Day event with 67 patients and caregivers in attendance. Patients traveled from as far away as Southern California and the Sierra Foothills to participate.  Our agenda included presentations from three Prothena scientists whose slide shows reinforced our growing knowledge of amyloidosis and delighted us with actual microscopic images of macrophages “consuming” the mis-folded light chains.

Patients are our motivation and addressing unmet medical needs guides the work of our scientists.  We don’t have too many opportunities to meet the people who might one day benefit from the medicines we are working on in our labs, but when we do, we always learn something incredibly valuable and leave with renewed inspiration. Working with ARC always provides a great way for us to keep the patient voice in focus.” Wagner Zago, PhD, Chief Scientific Officer

Another highlight of our meeting included tours of the research labs at the beautiful new Prothena facility where group members could see the science in action, up close and personal, and where even the most challenging questions from patients and caregivers were thoughtfully addressed.

 “Working in biotech is incredibly rewarding because there is always the potential to see your efforts translated into a product that enhances length or quality of life for patients. Getting the science right is the first step, but engaging with patients and patient advocacy groups is an incredibly important part of our work because it helps us to understand what people with devastating diseases are dealing with and what is important to them.” Enchi Liu, PhD, Program Team Leader

Rounding out our very busy event were two key amyloidosis physicians from the University of California San Francisco Medical Center – cardiologist Van Selby and hematologist Sandy Wong with 90 minutes of patient Q&A.  Always generous with their time Drs. Selby and Wong are working together at UCSF to build the multi-disciplinary amyloidosis team there and to implement amyloidosis clinical trials. 

For more information on the Northern California Support Group contact Dena Heath: dheath@arci.org

ARC

Amyloidosis Research Consortium, 275 Grove Street, Newton, MA, 02466