Will I Be Next?

Film Outreach Development at the American Geriatrics Society

Film Outreach Development at the American Geriatrics Society

“Will I Be Next?” Producer Therese Barry-Tanner attended the American Geriatrics Society Annual Scientific Meeting in San Antonio by invitation on May 19. There, she met with members of the Clinical Research in Dementia Special Interest Group. The group is committed to networking among AGS members who are dedicated to clinical research in older adults suffering from dementia. It’s a collaborative forum for members to share findings and methodologies. The chair, Dr. Noll L. Campbell’s interest is in medication management of older adults with cognitive impairment. The purpose of Barry-Tanner’s presence at the meeting was to introduce the group to “Will I Be Next?” and to discuss two community engagement goals adopted from the National Plan to Address Alzheimer’s Disease: 1.      Accelerate the discovery for a cure for Alzheimer’s disease. 2.      Activate a culture of brain health. The project goals resonated with the Clinical Research in Dementia Special Interest Group, as their primary goal is accelerating the discovery of a cure. Some of the barriers to finding a cure to Alzheimer’s disease have included a lack of public awareness, not enough volunteers willing to participate in research, and shortage of funding. One geriatrician from Toronto has been in the field for over 25 years and said that it’s the same story when a patient is diagnosed today as it was back then — there still isn’t a cure or a way to prevent the disease. Dr. Campbell and the group are interested in partnering with the film and furthering mutual...
Remembering Why on Mother’s Day

Remembering Why on Mother’s Day

My mother, Helen Paul, was diagnosed with Alzheimer’s in the spring of 2001. My father called me earlier in the year saying she was having trouble completing her sentences – she could not remember the words she wanted to use. I made the 40-minute trip to visit and saw for myself. We knew something was wrong, but we weren’t sure what it was. It got worse. We took her to see a neurologist who had her complete a short memory test. She answered only about half of the questions correctly. That was shocking to both of us. While it wasn’t definitive, the neurologist told us it could be Alzheimer’s or another form of dementia. Later the suspicion was confirmed when an MRI showed her hippocampus (the part of the brain that is involved in forming, organizing and storing memory) to be small – much smaller than it should be, a telltale sign of Alzheimer’s. That summer my dad and I went to a class on Alzheimer’s at the local hospital, so we could learn more about the disease. That’s also where I learned about WRAP. Dr. Mark Sager gave an overview of the disease at one of the sessions and he also talked about the study. Not long after that, I signed up and began traveling to Madison every two to three years to be tested. The seven years of my mother’s decline and eventual death from Alzheimer’s disease was one of the worst things my family and I have ever been through. A little more than two years after my mother’s death, I got an idea. Because of...
Activism – With a Bang or a Blood Draw

Activism – With a Bang or a Blood Draw

Scientific progress can be long in human years. With each generation, young scientists stand on the shoulders of giants. Many never see the full impact of their work. Scientific research is a pay-it-forward endeavor. The March for Science, coming worldwide April 22, is significant because for the first time, many folks who may prefer to “let the evidence speak” will be holding picket signs and raising their voices. With the slogan, “Science, not Silence,” the organizers assert that the scientific process must be safeguarded – shouted, not muzzled. The March for Science, a self-described diverse non-partisan group, seeks to, “envision and sustain an unbroken chain of inquiry, knowledge, and public benefit for all.” “Science is first and foremost a human process — it is conducted, applied, and supported by a diverse body of people. Scientific inquiry is not an abstract process that happens independent of culture and community. It is an enterprise carried out by people who seek to expand our knowledge of the world in the hope of building a better, more informed society.”[1] This important movement is a battle cry to safeguard science. It sounds a necessary alarm about the fragility of science and the need for people to publicly and bravely fight for its existence. The urgency to safeguard scientific research is especially evident in longitudinal studies that are making progress to reverse clear death spirals—for example, the way many family history studies are figuring out how to stop Alzheimer’s disease. The WRAP study has an unbroken chain of data from over 1,500 subjects since the year 2001. The study tracks biological and cognitive changes in people at high risk of Alzheimer’s...
Short Work-in-Progress Clip Screened at International Neuropsychological Society Symposium

Short Work-in-Progress Clip Screened at International Neuropsychological Society Symposium

Will I Be Next? was featured at an important symposium entitled “The Next Generation: A Look at Cohort Studies of People at Risk for Alzheimer’s Disease” at the 45th annual conference of the International Neuropsychological Society in New Orleans on February 3rd.  Producer Therese Barry-Tanner kicked of the symposium with a short work-in-progress clip of the documentary providing more than 200 researchers who attended this session with a different perspective of the research process – that of the human research subjects. From there, the symposium transitioned to a discussion of several longitudinal cohort studies including their seminal findings and future directions. Cohorts included: The WRAP study (University of Wisconsin, PI: Sterling Johnson, PhD) The Adult Children Study (Washington University, PI: John Morris MD; presented by Jason Hassenstab, PhD) The BIOCARD Study (Johns Hopkins University, PI: Marilyn Albert; presented by Anja Soldan, PhD) The Offspring Study (Columbia University, PI: Jennifer Manly, PhD) The Vanderbilt Memory and Aging Project (Vanderbilt University Medical Center, PI: Angela Jefferson, PhD) The key findings from these studies focused on neuropsychological and biomarker changes in people at risk for Alzheimer’s disease, characteristics that may pose resilience against cognitive decline and implications for participant selection in future trials for Alzheimer’s prevention. In his introduction to the clip, WRAP PI Sterling Johnson said that one way the film is important to scientists is that it helps researchers understand what participants go through. Following the symposium, Anja Soldan of John Hopkins said, “This is a very moving film that tells the human side of what’s it’s like to have lived with and cared for a loved one with Alzheimer’s disease....
Clinical Trials: Debunking the Myths

Clinical Trials: Debunking the Myths

Clinical trials are important for scientists to find cures for diseases. However many people who may be eligible to participate are held back by misconceptions and fears.  The truth is that the greater number of people who participate in studies and trials, the faster a cure can be found. The Alzheimer’s Association website lists nine myths people frequently associate with participating in an Alzheimer’s clinical trial. We spoke with Ben Farral, Coordinator of the Solanezumab Clinical Trial for Those with Preclinical Memory Complaints (A4) at the Wisconsin Alzheimer’s Disease Research Center. The A4 trial is testing the effectiveness of the drug Solanezumab on older individuals (ages 65-85) who may be at risk for memory loss due to Alzheimer’s disease, but have no outward signs of the disease.  The study began in 2014 and needs more participants. What are Farral’s responses to the myths? Myth #1:  There are already plenty of volunteers. They don’t need me to participate. Farral:  The A4 trial is seeking around 1150 participants worldwide and we’re currently in the 700s, so we need about 450 more. Myth #2:  It’s too late – the disease is too advanced to participate in a research study. Farral:  My study is a preventative study for those at risk but without current memory concerns. My participants, when they find out they are at risk, tend to become more motivated to participate because they know this trial is the closest thing to a cure in existence right now and, even if it ends up not working, it still helps to direct future research. Myth #3:  Clinical trials are dangerous because they use new and unproven methods...