Will I Be Next?

Will I Be Next?

A BATTLE FOR THE BRAIN THAT BEGINS WITH THE HEART


An independent documentary about the search for a cure to Alzheimer’s disease

 

The Story

Will I Be Next? is about the quest to find a cure for Alzheimer’s disease as told by human research subjects in a long-term medical study.

This independent documentary intimately shows what happens when human test subjects – who are at high risk for developing Alzheimer’s disease – offer their blood, brains, and hearts to conquer it.

Since Dr. Mark Sager took the initiative in 2001, medical research scientists at the Wisconsin Alzheimer’s Institute at the University of Wisconsin have been on a mission – to figure out how to prevent, and eventually cure, Alzheimer’s disease.

Their method is to track the characteristics and habits of people at high risk for the disease, and to observe them in biological detail as they age. Some convert to Alzheimer’s disease and some do not. Why?

After humble beginnings, the study—the Wisconsin Registry for Alzheimer’s Prevention (WRAP) —is now recognized by the National Institutes of Health as a high-priority research site.

At the heart of the Alzheimer’s study are the test group participants – middle-aged adults with a deceased or living parent with Alzheimer’s disease. Parental history makes the test group 3x more likely to get the disease than those without a history of it in their families.

The human research subjects are followed by the scientists for a minimum of 15 to 20 years and undergo periodic and rigorous cognitive tests.

The test group also shares one of life’s most difficult trials – a parent’s decline from Alzheimer’s disease.

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The Characters

Barb, Karen and Sigrid also return every two to three years to undergo the signature experience – a multidisciplinary oral cognitive test. This battery of questions looks for problems with their memory that signal their worst fear—the onset of Alzheimer’s disease.

By combining clinical, brain imaging, biomarker information and physical fitness data, scientists are in pursuit of both the causes of the disease and what lifestyle practices may help delay the onset. It’s a race against time, but thus far, Alzheimer’s has been the victor.

As the researchers compile data from 1,500 participants over the first period of the study, a narrative begins to emerge. 

How soon will an answer be found?

Can it be found in time?

Film News

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

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 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...

Filmmakers

Therese Barry-Tanner

Therese Barry-Tanner

PRODUCER/SOUND

Therese Barry-Tanner has been a participant in the WRAP study for more than ten years. Therese understands Alzheimer’s disease at an intimate level. She assisted her father in caring for her mother with the disease. Later she advocated for her mother fiercely at a nursing home — her mother was unable to speak for herself. Therese lost her mother to Alzheimer’s disease in November of 2008. Will I Be Next? began as Therese’s idea in 2011. Therese hopes that Will I Be Next? will bring the audience through the emotional journey and difficult decisions that are made when a loved one lives with or dies from Alzheimer’s disease. The film, Therese hopes, will share the experience of being a human research subject, and that it will offer an inside look at the people who are working to find a cure. Therese has worked in the healthcare industry for over 25 years, with over 15 years in project management. She is currently a program leader for implementation of the Affordable Care Act.

Melissa Godoy

Melissa Godoy

DIRECTOR/CINEMATOGRAPHER

Godoy was Line Producer for the Oscar-nominated documentary short, The Last Truck by Steven Bognar & Julia Reichert (HBO); and Line Producer for Bognar and Reichert’s Emmy Award-winning documentary about children with cancer, A Lion in the House (Independent Lens/PBS). She was the Cincinnati cinematographer for Election Day by Katy Chevigny (POV/PBS); a cinematographer for the short docs Making Morning Star and Sparkle (Lifecasters/PBS) both by Bognar & Reichert; and a shooter for Andrea Torrice’s Trees in Trouble: Saving America’s Urban Forests (PBS/NETA). Her documentary about creative aging, Do Not Go Gently, co-produced with Eileen Littig, is airing for the 10th consecutive year on PBS stations through American Public Television. The film received a National Media Award from the American Society of Aging. For the past seven years Godoy has been shooting Rebirth of Over-the-Rhine, a narrative documentary about change in Cincinnati’s historic core.

Eileen Littig

Eileen Littig

PRODUCER

Eileen Littig is an independent producer and the former director of Northeastern Wisconsin In-School Telecommunications. With Wisconsin Public Television, she has produced numerous television programs for children and teens, and has been recognized with a Corporation for Public Broadcasting Gold Medal and two Midwest Emmys. For 28 years, Littig produced Teen Connection, a series of live call-in programs on contemporary teen issues that  aired on Wisconsin Public Television. Recent work, with Dean Leisgang at Educational Television Productions of Northeastern Wisconsin, includes a short doc for teens called If a Bully Watches This and the story of a pioneer female environmentalist, Emma Toft: One With Nature. Littig received an Athena Award (2007) and the Carol Montie Community Service Award by the Mediation Center of Greater Green Bay (2011) for her “extraordinary commitment and accomplishments in bringing out the voices of all people and in promoting dialogue and understanding.” She serves on the Wisconsin Educational Communications Board.

Shawndra Jones

Shawndra Jones

SOUND/GRIP

Jones was a producer/shooter/editor and sound recordist for Reinvention Stories, a collaboration between the National Public Radio station in Yellow Springs, Ohio – WYSO 91.3, led by Neenah Ellis, and filmmakers Steven Bognar and Julia Reichert. In 2012, she was a sound mixer for the short docs Making Morning Star, which premiered at the 2016 Cleveland International Film Festival and Sparkle (Lifecasters/PBS), both by Bognar & Reichert. In 2015 she was on the location sound team for Contemporary Color, a visual and audio extravaganza by the Ross Brothers, which premiered at the Tribeca Film Festival. Jones was the Cincinnati sound engineer for The New Black by Yoruba Richen (Independent Lens/PBS). Jones is a graduate of Wright State University’s Motion Picture Program. She also works at WBDT and WDTN-TV in Dayton.

Amy Kruep

Amy Kruep

SOUND/GRIP

Amy Kruep, RNC, DCP has worked with the older adults for more than 30 years, particularly those with Alzheimer’s disease and related dementia. She is a nurse manager for Residential Care at Mercy Health West Park, a continuum care facility in Cincinnati, where she created the DaySTAE (Success Through Arts & Environment) dementia program. Kruep serves on the Alzheimer’s Association Greater Cincinnati Public Policy Committee, and she is a regional trainer for the national TimeSlips™ creative storytelling program. Kruep produced two short fiction films in collaboration with participants in her DaySTAE program: Runaway Train (2010) and Until Sadie Blotz (2012). Until Sadie Blotz is about an unhappy nursing home resident who returns to a day in her life. Created by writers and actors with dementia, it screened at the Positive Aging Conference in Los Angeles and the American Society on Aging in Chicago. Amy cared for her father through his last days with Alzheimer’s disease.

Jo Hillman

Jo Hillman

ASSOCIATE PRODUCER

Jo cared for her mom when she was diagnosed with Alzheimer’s disease. After her mother’s death in 2004, Jo became a human test subject in the WRAP study. A post-secondary educator, Jo’s career has taken her to private and public institutions across the U.S. and Canada. She has received awards of excellence for her teaching and quality enhancement initiatives. Jo was Vice President of the National Quality Academy, taking continuous quality improvement concepts to schools of higher education. She is the founding principal of Performance Horizons Consulting Group, which offers quality improvement strategies to post-secondary schools. Jo’s media productions include Connections, a customer service training program for higher education and Keeping the Green in Greenville, about urban forestry in a Wisconsin town.

Karen Y. Durgans

Karen Y. Durgans

Community Engagement Consultant

Karen was Associate Producer and Outreach Coordinator for Steven Bognar and Julia Reichert’s A Lion in the House, an Emmy Award-winning documentary and national outreach project (Independent Lens/PBS). Durgans was a field researcher for the U.S. Financial Diaries Project, a research and development partnership between New York University Wagner’s Financial Access Initiative and the Center for Financial Services Innovation out of Chicago. She provided research, logistical and audio support for “American International Health Alliance: Partners in Health,” which profiled international sister-city partnerships in Armavir, Armenia and Galveston, Texas. “Partners in Health” aired in Season 10 of the award-winning PBS series, The Visionaries.

Jean Wentz

Jean Wentz

Production Assistant

Jean worked as an archives assistant at the University of Wisconsin-Green Bay library for 20 years before making a career change. She is now a caregiver for the elderly and those with disabilities, including Alzheimer’s disease and other dementias. Jean is also the administrative assistant for the Green Bay Area Unitarian Universalist Fellowship and Chair of the Sunday Services committee. She just received her certification as a mandala facilitator in the tradition of Dr. Rajita Sivananda (Judith Cornell), which involved 108 hours of leading workshops.

Partners

Center-for-IndependentDocumentary

Center for Independent
Documentary

The Center for Independent Documentary (CID) collaborates with independent filmmakers to create documentaries on issues of contemporary social and cultural concern. CID is the fiscal sponsor of Will I Be Next? and manages the project funds through their 501(c)(3). They bring expertise in fundraising, production, and distribution. Recent CID projects include Nancy Kates’ Regarding Susan Sontag (HBO) and Cheryl Furjanic’s Back on Board: Greg Louganis. Founded in 1981, CID’s programs have screened at major festivals, aired nationally and locally on public and cable television, and earned numerous awards.

Alzheimers-Association

 

Alzheimer’s Association
GREATER WISCONSIN CHAPTER

The Greater Wisconsin Chapter aided in securing initial funding for Will I Be Next?, which was instrumental to making the project a reality. It is one of over 70 Alzheimer’s Association chapters across the United States and shares the organization’s mission: “To eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.”

Will I Be Next is made possible with support from:

  • Bader Philanthropies
  • Recall Foundation (formerly Extendicare)
  • Irene D. Kress
  • Arthur & Hilde Erickson Family Trust
  • The Premonstratensian Fathers Augustine Stewardship Fund
  • Philip J Hendrickson in Memory of Elizabeth Hendrickson
  • Marianne Van Drisse
  • Jewish Foundation of Greater Dayton
  • Greater Green Bay Community Foundation
  • Scott & Nancy Armbrust Fund
  • Paul, Barry & Tanner Family Fund in memory of Helen and Jerry Paul
  • Green Bay Packers Foundation
  • Tod and Carolyn Zacharias
  • Johnson Juengst Fund
  • Daniel & Nancy Gulling
  • Laura Morrison
  • John & Gisela Brogan
  • Frances Frigo
  • Long Family Foundation Trust Agency
  • Court and Patricia Larkin
  • Carol DeGroot
  • Donald and Jennifer Sipes
  • Judy Nagel
  • Dennis and Lavon Rader
  • Individuals honoring a loved one who died of AD
  • Online donations – The Quest
  • Producer Cash
  • In-Kind Time Donations by Producers

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