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The MyAlzheimers Story Project

Podkast av Zach Jordan

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Les mer The MyAlzheimers Story Project

"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.

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7 Episoder

episode #7 The Future of Medicine Will Be Powered By Your Personal Story cover

#7 The Future of Medicine Will Be Powered By Your Personal Story

Jason Moore, PhD. [http://jasonhmoore.org/] is now Chair of the Department of Computational Biomedicine at Cedars-Sinai Medical Center [https://www.cedars-sinai.edu/research/departments-institutes/computational-biomedicine.html] 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 [http://epistasis.org/jason-h-moore-phd/] You can find out more about the MyAlzRoadtrip by visiting our Facebook page [https://www.facebook.com/myalzheimers] and learn more about our story, by watching the feature length documentary: "Carpe Kilimanjaro" on Amazon Video [https://www.amazon.com/Carpe-Kilimanjaro-Zach-Jordan/dp/B07C3K4CL5].

19. sep. 2022 - 24 min
episode #6 The Gut Brain Connection and Lessons in Living Longer cover

#6 The Gut Brain Connection and Lessons in Living Longer

Dr. Robert P. Friedland [https://louisville.edu/medicine/departments/neurology/faculty/friedland] shares a bit about his research related to gut-brain connections [https://www.nature.com/articles/d41586-021-00260-3], 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 [https://content.iospress.com/articles/journal-of-alzheimers-disease/jad142841] National African American Alzheimer Disease Health Literacy Program [https://pubmed.ncbi.nlm.nih.gov/22720322/] National Institute of Aging: What causes Alzheimer’s? [https://www.nia.nih.gov/health/what-causes-alzheimers-disease] Mayo Clinic: Mediterranean Diet [https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/mediterranean-diet/art-20047801] NIH: The Mediterranean Diets [https://pubmed.ncbi.nlm.nih.gov/11694649/] Blue Zones by Dan Buettner  [https://www.bluezones.com/dan-buettner/] Harvard: The Microbiome [https://www.hsph.harvard.edu/nutritionsource/microbiome/] WHO: Dementia Statistics [https://www.who.int/news-room/fact-sheets/detail/dementia] You can find out more about the MyAlzRoadtrip by visiting our Facebook page [https://www.facebook.com/myalzheimers] and learn more about our story, by watching the feature length documentary: "Carpe Kilimanjaro" on Amazon Video [https://www.amazon.com/Carpe-Kilimanjaro-Zach-Jordan/dp/B07C3K4CL5].

19. sep. 2022 - 23 min
episode #5 My Life As A 30-Something Caregiver cover

#5 My Life As A 30-Something Caregiver

Veronica is a young caregiver from Texas and the Founder of Dementia Care Warriors [https://www.iamacarewarrior.org/]. Elizabeth is a young caregiver from New Jersey [https://everloved.com/life-of/louis-brood/]. 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 [https://www.txalz.org/] AARP “Typical” Millennial Caregiver [https://www.aarp.org/content/dam/aarp/ppi/2020/05/millennial-caregiver.doi.10.26419-2Fppi.00103.013.pdf] UsAgainstAlzheimers Report on Millennial Caregivers [https://www.usagainstalzheimers.org/sites/default/files/Dementia%20Caregiver%20Report_Final.pdf] You can find out more about the MyAlzRoadtrip by visiting our Facebook page [https://www.facebook.com/myalzheimers] and learn more about our story, by watching the feature length documentary: "Carpe Kilimanjaro" on Amazon Video [https://www.amazon.com/Carpe-Kilimanjaro-Zach-Jordan/dp/B07C3K4CL5].

19. sep. 2022 - 21 min
episode #4 Only You Can Help Prevent Financial Elder Abuse cover

#4 Only You Can Help Prevent Financial Elder Abuse

Danny Hutcherson is a Financial Gerontologist 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 [https://www.justice.gov/elderjustice/find-support-elder-abuse]  National Institute on Aging: Managing Money Problems in Alzheimer’s Disease [https://www.nia.nih.gov/health/managing-money-problems-alzheimers-disease] Alzheimer’s Association: Costs of Alzheimer’s to Medicare and Medicaid [https://act.alz.org/site/DocServer/2012_Costs_Fact_Sheet_version_2.pdf?docID=7161] National Council on Aging: Elder Abuse [https://www.ncoa.org/article/get-the-facts-on-elder-abuse] Institute for Neurodegenerative Diseases: Costs of Dementia [https://ind.ucsf.edu/supporting-our-work/cost-dementia] Department of Justice: Elder Abuse Statistics [https://www.justice.gov/file/1098056/download] AARP: Older Americans Hit Hard by Financial Fraud [https://www.aarp.org/money/scams-fraud/info-2019/cfpb-report-financial-elder-abuse.html] Stanford Center on Poverty and Inequality: 20 Facts About U.S. Inequality that Everyone Should Know [https://inequality.stanford.edu/publications/20-facts-about-us-inequality-everyone-should-know]  You can find out more about the MyAlzRoadtrip by visiting our Facebook page [https://www.facebook.com/myalzheimers] and learn more about our story, by watching the feature length documentary: "Carpe Kilimanjaro" on Amazon Video [https://www.amazon.com/Carpe-Kilimanjaro-Zach-Jordan/dp/B07C3K4CL5].

19. sep. 2022 - 22 min
episode #3 Diagnosed at Age 51: A Story of Servant Leadership cover

#3 Diagnosed at Age 51: A Story of Servant Leadership

Jeff Borghoff [https://borghoff.com/] was diagnosed with younger onset at the age of 51. During our stop in New Jersey, Jeff and his wife Kim shared their experiences with us and offer a candid look into the challenges they continue to face, as well as their advocacy work in the Alzheimer's community.   Check out the links below to learn more about the topics discussed in this episode: Blue Cross Blue Shield 2020 Early Onset report [https://www.bcbs.com/the-health-of-america/reports/early-onset-dementia-alzheimers-disease-affecting-younger-american-adults] Alzheimer’s Association 2021 Facts and Figures [https://www.alz.org/media/documents/alzheimers-facts-and-figures.pdf] RBC Wealth Management report on women and caregiving [https://www.rbcwealthmanagement.com/_us/static/documents/cmp/prepare-for-the-expected.pdf?utm_id=wm1553278117697397] AARP: Caregiving in the US (2020) [https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf] AARP: Global Council on Brain Health [https://www.aarp.org/health/brain-health/global-council-on-brain-health/] CDC: Caregiving for a person with Alzheimer’s disease or a related dementia [https://www.cdc.gov/aging/caregiving/alzheimer.htm#:~:text=The%20majority%20(80%25)%20of,Alzheimer's%20disease%20and%20related%20dementias.] You can find out more about the MyAlzRoadtrip by visiting our Facebook page [https://www.facebook.com/myalzheimers] and learn more about our story, by watching the feature length documentary: "Carpe Kilimanjaro" on Amazon Video [https://www.amazon.com/Carpe-Kilimanjaro-Zach-Jordan/dp/B07C3K4CL5].

19. sep. 2022 - 26 min
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