Will I Be Next?

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...
Thank You

Thank You

We are grateful. . . for the wonderful support we’ve received every step of the way from so many – our funders and contributors, partners who’ve provided feedback and a willingness to assist going forward, those who have “Joined the Quest” on our website and our Facebook and Twitter followers – it’s all of you who have made WIBN possible!    – Therese for the courage and stick-to-itiveness of the people in the film!  – Melissa   for being able to join this exceptional team to make something truly special.  – Shawndra for the strength and determination in the sometimes painful moments we feel within ourselves to push through for the greater good.  – Amy for the support, encouragement, and financial contributions we have received and yet to come to complete the film. I feel this film will help caregivers cope with this disease.  – Eileen for the Wisconsin Registry for Alzheimer’s Prevention–the dedicated scientists and committed human test subjects–who inspire the film team to bring the stories and advances in research to a broad audience. I’m also grateful for the chance to honor my Mother, turning the sadness of her experience into a purposeful volunteer effort.  – Jo to be of service to this worthwhile project by bringing into play a hodge-podge skill set I’ve acquired over the years, and also the ability to learn a completely new industry!  I am also thankful for the wonderful team I get to work with.  – Jean THANK YOU to the Will I be Next? community! [Photo: Fall in Green Bay by Therese...
Alzheimer’s Association Miami Valley Ohio Chapter hosts “Will I Be Next”  Night of Innovation and Research

Alzheimer’s Association Miami Valley Ohio Chapter hosts “Will I Be Next” Night of Innovation and Research

Keith Fargo, Director of Scientific Programs and Outreach for the Alzheimer’s Association and Kimberly Mueller, a researcher for the Wisconsin Alzheimer’s Institute were two keynote speakers at a community science and education event hosted by the Miami Valley Chapter of the Alzheimer’s Association in Dayton last week. A short work-in-progress clip from Will I Be Next? kicked off the event by offering participants a glimpse into the world of Alzheimer’s disease research. Dr. Fargo, who manages the Alzheimer Association’s scientific publications including the Alzheimer’s disease Facts and Figures, brought the audience up to date on AD research. He summarized progress on several important studies, including the A4 study, which is being conducted at 67 sites across the county. Kimberly Mueller, MS, summarized key findings from the Wisconsin Registry for Alzheimer’s Prevention, including lifestyle factors that may be helpful in building resilience to the disease. Some of the factors she shared included the WRAP team’s research into controlling diabetes, and the impact of exercise, sleep, and socialization on resilience. Both speakers emphasized the importance of getting involved in clinical trials. Dr. Fargo, who leads the Alzheimer Association’s innovative TrialMatch® program, invited participants to fill out a card to learn more and possibly get matched up with a trial. Then a panel of research doctors from the Dayton and Cincinnati region spoke about their studies, challenges, and observations. The panelists were: Neurologist Dr. Lawrence Goldstick from the University of Cincinnati College of Medicine, Dr. Meenakshi Patel, Principal Investigator for Valley Medical Research in Centerville, Ohio, and Dr. Kenneth Pugar, President and Founder of Dayton Center for Neurological Disorders. All three are...
Meet the Scientists

Meet the Scientists

  New from Will I Be Next – a short video to meet the film’s research scientists. Why do they do what they do? How does a team of people with diverse experiences, backgrounds, and ideas play to their strengths? How will they unravel the mystery of Alzheimer’s disease? Also, here’s a recent article from Healthline News about the necessity of human research subjects to research scientists. Without dedicated people in clinical trials and studies, scientists cannot do their work. The article features some of the subjects and scientists from the Wisconsin Alzheimer’s Disease Research Center who appear in Will I Be Next? –Melissa Godoy, Director...