Rachel and Maria, founders of the Remember Me Podcast, joined the ALLFTD Study and produced eight podcast episodes in June 2022 that detail their experiences.
Two podcast episodes were released per week. One covers an ALLFTD visit procedure, and the other discusses the science behind that procedure. To learn more about ALLFTD, visit the website at www.allftd.org
Remember Me was created by two moms, Rachel and Maria, to honor the lives of individuals touched by frontotemporal dementia (FTD) and the family and friends walking the journey alongside them.
The ALLFTD episodes are sponsored by Bluefield Project to Cure FTD, which supports research to improve our understanding of a genetic form of FTD and to help find a cure for this disease. Bluefield along with NIH and others helps fund studies of families affected by FTD. It has supported more than 40 researchers at universities across the world in order to understand the science behind FTD caused by mutations in progranulin.
For the ALLFTD mini-series, Rachael is the study participant, and Maria is the care partner. The episodes range in length from 25 minutes to 45 minutes. Listen and learn what it was like for them to participate in this important FTD observational study.
ALLFTD PODCAST LIST
June 7, 2022 - Day 1
Day 1 covers consent forms, blood work, and neuropsychology (neuropsych) testing.
June 9, 2022 - All About Neuropsych Testing with Psychometrist Steve Smith of the Mayo Clinic
As a follow-up to Day 1, Steve Smith, Senior Program Coordinator at the Mayo Clinic in Rochester, Minnesota, shares more information about neuropsych testing. He explains what it is like to administer the tests, what is looked for during testing, and how the tests may lead to an FTD diagnosis.
Steve has 12 years of experience in research and neuropsychological testing. He oversees research coordination, psychometric testing, and daily operations of the Mayo Alzheimer’s Disease Research Center.
June 14, 2022 - Day 2
Day 2 is MRI Day.
June 16, 2022 - All About MRIs with Dr. Howie Rosen of UCSF
As a follow-up to Day 2, Dr. Howie Rosen, one of the three ALLFTD principal investigators, discusses MRIs and how they are used in the ALLFTD Study and in diagnosing FTD.
Dr. Rosen is a behavioral neurologist and holds the Dorothy Kirsten French Foundation Endowed Professorship for Parkinsonian and Other Neurodegenerative Disorders at the University of California, San Francisco (UCSF). He is an investigator on multiple federal and state-funded research grants and serves as director of the California State Alzheimer’s Disease Center at UCSF, associate director of UCSF’s federally funded Alzheimer’s Disease Research Center, director of UCSF’s Behavioral Neurology Training Program, and director of Curriculum for the Global Brain Health Institute.
June 21, 2022 - Day 3
Day 3 had a few surprises! It included the visit with the physician to review the neuropsych testing and the MRI.
June 23, 2022 - All About FTD with Dr. Brad Boeve of the Mayo Clinic
As a follow-up to Day 3, Dr. Brad Boeve, one of the three principal investigators for the ALLFTD Study, discusses what is known about FTD and what is being learned through this study.
Dr. Boeve is a professor of neurology in the College of Medicine and Science and a consultant in the Department of Neurology and Center for Sleep Medicine at the Mayo Clinic in Rochester, Minnesota. He also is a co-director of the Clinical Core of Mayo’s Alzheimer’s Disease Research Center. Dr. Boeve is recognized with the distinction of the Little Family Foundation Professorship in Lewy Body Dementia.
June 28, 2022 - Day 4
Day 4 covers the lumbar puncture. It also is the last day of research.
June 30, 2022 - All About Fluid Biomarkers with Dr. Adam Boxer of UCSF
As a follow-up to Day 4, Dr. Adam Boxer, MD, PhD, one of the three ALLFTD study principal investigators, discusses fluid biomarkers and also the purposes of the bloodwork and lumbar punctures.
Dr. Boxer is Endowed Professor in Memory and Aging in the Department of Neurology at the University of California, San Francisco (UCSF). He directs UCSF’s Neurosciences Clinical Research Unit and the Alzheimer’s Disease and Frontotemporal Degeneration (FTD) Clinical Trials Program at the UCSF Memory and Aging Center. Dr. Boxer’s research is focused on developing new treatments and biomarkers for neurodegenerative diseases, particularly those involving tau and TDP-43.
Dr. Boxer received his medical and doctorate degrees as part of the NIH-funded Medical Scientist Training Program at New York University Medical Center. He completed an internship in Internal Medicine at California Pacific Medical Center, a residency in Neurology at Stanford University Medical Center, followed by a fellowship in behavioral neurology at UCSF.
ABOUT REMEMBER ME PODCAST
Remember Me was created in 2020 by strangers who were living on opposite coasts, caring for their young parents with FTD. The two moms became friends on Instagram. The podcasts feature stories about FTD with a focus on remembering the individuals for who they were before the disease.
Through the art of storytelling, the podcasts take the listener on a journey through darkness and back into the light. Family members who have a loved one diagnosed with FTD share their experiences. The stories are raw, real, and full of love. The creators hope it inspires others to "accept the good."
A new episode is released each week on Mondays. You can subscribe on Apple Podcasts or Spotify.
You can connect with Remember Me Podcast on Instagram at @remembermepodcast