Will I Be Next?

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...
Making Mischief: Spiritual Care in Advanced Dementia

Making Mischief: Spiritual Care in Advanced Dementia

As a Memory Care Chaplain, I see my role as providing comfort, meaning, dignity, worth, and—yes—fun to the lives of friends who are living with advanced dementia. Most of the conversations I participate in are decidedly non-linear but thoroughly enjoyable. It is a deeply spiritual role, but it requires a very broad understanding of what constitutes spirituality. It means affirming connection and relationality. It means helping persons to speak through the arts when they no longer have access to words. Sometimes it means offering prayer or sacred readings, and sometimes it means singing “She’ll be coming ‘round the mountain” while playing a ukulele. It means being present in love and joy. Recently a resident asked me, “What do you do here?” “I make mischief,” I answered. With a big grin she offered to help me.  It is as good a job description as any.1-3 I am certified in TimeSlips creative story telling (www.timeslips.org), and take great pleasure in facilitating group interactions as we create a story together. But my TimeSlips training is also invaluable in my care for individuals, helping me to enter into the world of dementia in a creative, playful manner. My friend and I can go on an imaginative journey together, with neither of us knowing where it may lead but each finding pleasure and meaning in that journey. The pleasure of conversation with any friend lies not in the topics discussed, but in the manner in which we connect with one another, and therefore my conversations with my friends living with dementia bring me as much pleasure as any other. Leading worship services for persons...
Simulated Alzheimer’s Offers Empathy

Simulated Alzheimer’s Offers Empathy

I knew where I was, approximately, but the room was dark and unfamiliar. I knew I had tasks to do, but I struggled to recall specifics. With the exception of a small circle of lucidity at the center of each eye, my field of vision was largely opaque, like I was looking through the wrong end of binoculars. Voices, garbled beyond comprehension, diverted my attention. I couldn’t tell whether they were speaking to me, to each other, or to no one in particular. I felt like sitting down. If I couldn’t remember what I was supposed to do, what else could I do? I could sit and stare at the wall and drift off. At least it would pass the time. I started toward the rocking chair, but saw piles of clothes on the bed, and remembered then that one of my tasks was to fold the pillow cases. An otherwise simple undertaking proved difficult, however, as it took great concentration and physical effort just to grasp the fabric. A door slammed. More startling than the suddenness and force of the sound was the question of whether it actually happened, there in the room, or had occurred only in my mind. I shook the thought and pressed on. A thought materialized––something about the checkbook. Was I supposed to write a check or only produce it from the purse? But why would I get it out if not to write a check? And to whom? I found the purse on the counter, its dark contours blending into the darkness of the room. A siren blared and then faded. I took...