The MyAlzheimers Story Project: Recent Episodes
Zach Jordan
"The MyAlzheimers Story Project: Conversations from The Road", is a short collection of stories we collected during a road trip in June of 2019. We partnered with the Penn Memory Center, were sponsored by AARP, and we drove across the United states, visiting seven American cities, from Los Angeles to Philadelphia. The goal of the project is to equip scientists with the important stories they need, to create better care and work toward a cure. In each episode of our podcast, you will meet patients, families, advocates, clinicians and scientists - all sharing personal stories about their experiences with Alzheimer's and Dementia. This journey began with our own experience with Alzheimer's, which we share in the feature documentary, "Carpe Kilimanjaro: An Alzheimer's Story"; now available on Amazon Video. About 50 million people worldwide have some form of dementia and Alzheimer’s is the most common form of this brain disease. It doesn’t matter how old you are or where you live - you play a role in this story. This is OUR Alzheimer’s.
Jason Moore, PhD. is now Chair of the Department of Computational Biomedicine at Cedars-Sinai Medical Center in Los Angeles, CA. At the time of this interview (2019), Jason was Director of the Penn Institute for Biomedical Informatics.
We sat down with Jason to learn more about the important connection between personal story and patient data, and why it's a powerful piece of solving the problem of Alzheimer's.
Check out the link below to learn more about the topics discussed in this episode:
Computational Genetics Laboratory: Dr. Jason Moore
You can find out more about the MyAlzRoadtrip by visiting our Facebook page and learn more about our story, by watching the feature length documentary: "Carpe Kilimanjaro" on Amazon Video.
Anna Brocco, PharmD, MBA is Director of Operations & Clinical Research at Advanced Memory Research Institute of New Jersey. Jessica Langbaum, PhD is Director of the Alzheimer's Prevention Initiative, Banner Alzheimer's Institute, in Arizona.
Both experts have dedicated their lives to furthering the science of Alzheimer's and dementia research. They share their personal stories about why they are so passionate about their work and provide information on how you can get involved in the science.
Check out the links below to learn more about the topics discussed in this episode:
If The FDA Approves Biogen’s Alzheimer’s Treatment, I Won’t Prescribe It: Dr. Jason Karlawish
National Institute of Aging: Clinical Trials
Alzheimer’s Association: Trial Match
National Library of Medicine: Clinical Trials
NIA: Learn About Clinical Studies
Phil’s Journal: What’s Next for Passengers on The Aducanumab Clinical Trial Rollercoaster
Alzheimer’s Association: Clinical Trials: Myths vs. Facts
Alzheimer’s Association: Alzheimer’s disease drug development pipeline: 2021
National Institute of Aging: Treatment of Alzheimer’s Disease
You can find out more about the MyAlzRoadtrip by visiting our Facebook page and learn more about our story, by watching the feature length documentary: "Carpe Kilimanjaro" on Amazon Video.
Danny Hutcherson is a Financial Gertontologist and former US Marine. We sat down with Danny during our stop in Kentucky, to learn more about the growing issue of financial elder abuse and find out what we can do to be more proactive, when it comes to money matters and our aging family members.
Check out the link below to learn more about the topics discussed in this episode:
U.S. Department of Justice: How to Find Help or Report Abuse
National Institute on Aging: Managing Money Problems in Alzheimer’s Disease
Alzheimer’s Association: Costs of Alzheimer’s to Medicare and Medicaid
National Council on Aging: Elder Abuse
Institute for Neurodegenerative Diseases: Costs of Dementia
Department of Justice: Elder Abuse Statistics
AARP: Older Americans Hit Hard by Financial Fraud
Stanford Center on Poverty and Inequality: 20 Facts About U.S. Inequality that Everyone Should Know
You can find out more about the MyAlzRoadtrip by visiting our Facebook page and learn more about our story, by watching the feature length documentary: "Carpe Kilimanjaro" on Amazon Video.
Dr. Robert P. Friedland shares a bit about his research related to gut-brain connections, as well as the importance of storytelling in the scientific journey.
Check out these links to learn more about Dr. Friedland and the topics discussed in this episode:
Robert Friedland paper
National African American Alzheimer Disease Health Literacy Program
National Institute of Aging: What causes Alzheimer’s?
Mayo Clinic: Mediterranean Diet
NIH: The Mediterranean Diets
Blue Zones by Dan Buettner
Harvard: The Microbiome
WHO: Dementia Statistics
You can find out more about the MyAlzRoadtrip by visiting our Facebook page and learn more about our story, by watching the feature length documentary: "Carpe Kilimanjaro" on Amazon Video.
Dr. Jason Karlawish is Co-Director of the Penn Memory Center and author of "The Problem of Alzheimer's". We sat down with Jason during our stop in Philadelphia, Pennsylvania to find out why our collective stories play such an integral role in scientists' understanding of Alzheimer's.
Check out the links below to learn more about the topics discussed in this episode:
National Institute of Aging: Clinical Trials
Alzheimer’s Association: Trial Match
National Library of Medicine: Clinical Trials
Cure Alzheimer’s Fund: Women and Alzheimer’s
You can find out more about the MyAlzRoadtrip by visiting our Facebook page and learn more about our story, by watching the feature length documentary: "Carpe Kilimanjaro" on Amazon Video.
Veronica is a young caregiver from Texas and the Founder of Dementia Care Warriors. Elizabeth is a young caregiver from New Jersey. Both of these young women share their candid experiences about what it's like to care for multiple family members living with Alzheimer's.
Check out these links to learn more about young caregivers and the challenges they face:
Alzheimer’s Texas
AARP “Typical” Millennial Caregiver
UsAgainstAlzheimers Report on Millennial Caregivers
You can find out more about the MyAlzRoadtrip by visiting our Facebook page and learn more about our story, by watching the feature length documentary: "Carpe Kilimanjaro" on Amazon Video.