Over the last few days so much has been said about the way the termination of the Biogen Aducanumab clinical trial was made public. The information disseminated by the mass media caused a tremendous amount of emotional distress to the Alzheimer’s community. I believe my clinical trial center, Advanced Memory Research Institute of New Jersey (ARMI) feels the same way.
In no way do I hold AMRI accountable for the termination of this clinical trial nor the way the information was communicated. I had a personal conversation with Dr. Sharma yesterday, Saturday 3/24/19. He called me after he read the CNBC article, Failed Alzheimer’s trial leaves families and patients heartbroken. Medical community reels.
I could hear the genuine concern and empathy in his voice. He told me that he had to speak to many families from his research center who were involved in this trial, more than sixty, to discuss the termination of this trial and the next steps. He told me of the weeping families and patients; how members of his staff are heartbroken and were weeping as well.
ARMI in the past three years has been a beacon of hope in my life. They have become my friends and have stood by me in most, if not all of my advocacy work. I’m proud to know Dr. Sharma, Dr. Ramani, Dir. Anna Brocco and my Clinical Research Coordinator Lauren Bawiec, as well as the rest of the professional, caring and compassionate staff.
I will continue to encourage others to participate in research clinical trials to find a cure for Alzheimer’s whether I continue on to another or not.
I believe I made my point in this clip from our recent interview with Deborah Kan from Being Patient.
Full interview: A Late-Stage Alzheimer’s Trial Gave Them Hope—Until It Was Canceled
‘There Was So Much Hope’: Biogen Trial Participants Are ‘Heartbroken’ After Cancellation
Center Watch