‘Adventure Before Dementia’ is a radio show for camping enthusiasts. Whether you like staying in caravan parks or bush camping, be it up the river, along the coast, discovering unsealed national parks or more remote outback explorations, ‘Adventure Before Dementia’ is your weekly dose of escapism. Hosts Anita & Mike Pavey have worked as photo-journalists for some of Australia’s most popular 4x4, camper trailer and caravan publications. They have travelled widely including a 13-month Big Lap ...
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Remember Me is a podcast created by two moms who became fast friends on Instagram. It features stories of Frontotemporal Dementia (FTD) with a focus on remembering individuals for who they were before the disease. The stories shared are raw, real, and so full of love. We hope it inspires you to "accept the good." Follow us on Instagram @remembermepodcast. Visit our website www.remembermeftd.com Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
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On The Road with HFC | Music, Grief + Dementia with Karen Pearson at Amoeba Music
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We stopped at the ICONIC Amoeba Music... and we had the most tender conversation on music and grief with Co-Owner Karen Pearson. We loved hearing about her beloved Ilene. We could have talked for hours. We hope this episode finds the people who need to hear it so please share! And don't forget to follow us @remembermepodcast and @weareh…
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On the Road with HFC | The Brain Donation Decision with Lauren Miller Rogen
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A very special sit-down interview with Lauren Miller Rogen, actress, screenwriter, director AND co-founder of HFC alongside her husband Seth. This is a raw + honest conversation between 3 daughters of dementia about the decision to donate their parents brain's to research. We hope this episode finds the people who need to hear it so please shar…
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On The Road with HFC | A Little Summer Adventure
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Surprise! Here to share all about being on the road with HFC AKA Hilarity for Charity. Have no idea what we're talking about? Take a seat. From touching brains at UCI Mind to jamming out at Ameoba music to chatting up strangers on Hollywood Boulevard with Bruno the BRAIN PUPPET... we had ourselves an adventure. Buckle up for some fun + stay tuned…
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BONUS: Understanding Different Aspects of FTD Research with Dr. Irwin and Dr. Massimo
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35:36
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Y’all thought we’d stay away this long??? We’re baaaccckkk! And this is #2 of the TWO bonus episodes we produced for Season 8! In this episode we tackle the different types of research with Dr. Irwin and Dr. Massimo, the Co-Directors of the Penn FTD Center. Some of the questions we ask: -What are the different types of research? Pharmacological vs.…
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BONUS: Understanding Clinical Trials for FTD with Dahlia Kamel, Penn FTD Center
58:03
58:03
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Y’all thought we’d stay away this long??? We’re baaaccckkk! And this is one of TWO bonus episodes we produced for Season 8! In this episode we tackle Clinical Trials with our friend Dahlia Kamel, MS - Clinical Trials Lead at the Penn FTD Center. Some of the questions we ask: -What is a clinical trial? -What do the different phases mean? -What are t…
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Season Finale: In Conclusion...with Rachael + Maria
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53:21
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In conclusion...it's our season finale... and we're wrapping up this series with our own little bow. Make sure to listen til the very end. And stay in touch, follow us on IG, and keep up to date on all things RM. You never know when you may get an encore *cough* bonus *cough* episode or two... Thank you all for your support and love. Sincerely, R+M…
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Understanding Guardianship, Power of Attorney + More with Kate Lietz, MSW, LSW
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This week we talk all about Guardianship, Power of Attorney, Long Term Care... and other "scary" and confusing terms that can come up when planning care for your loved one. All with the help of Kate, a social worker at the Penn FTD Center. But before that, we dive into our friend Keri's personal experience getting Guardianship for her father, Mark.…
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Disease Trajectory with Lauren Massimo, PhD, CRNP, Co-Director of the Penn FTD Center
37:38
37:38
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Are there stages of FTD? What can you "expect"? This week we walk through disease trajectory with Dr. Lauren Massimo (also featured on Episode 2 - Understanding Apathy). Dr. Massimo breaks down what we know, and how she likes to guide families through these discussions. And this week's personal stories come from our friends Lauren and Michelle from…
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Understanding Hyperorality and Alcohol Use with Dr. Sara Manning, Penn FTD Center
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This episode revolves around the symptoms of hyperorality -- with a focus on the very common symptom of alcohol use (and abuse). Have a listen as the story meets the science with the lovely Dr. Sara Manning. We want to send big love to the entire Penn FTD Center Team for jumping in feet first, to our sponsors for their support and t…
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Understanding Loss of Empathy with Dr. Emma Rhodes
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This week we dive into loss of empathy with Dr. Emma Rhodes. We discuss how this behavior so often reveals itself with birth and death announcements and the episode is filled with personal stories from Rachael, Maria and their friends Lauren and Michelle from the Sister Project (Season 1 - June Pt. 1 & Pt. 2). We want to send big love to the entire…
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Understanding FTD and ALS with Corey McMillan, Phd, Co-Director of the Penn FTD Center
37:29
37:29
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WE'RE BACK! With a very important interview with the brilliant Corey McMillan, Co-Director of the Penn FTD Center. This week we tackle ALS and FTD - the science behind the connection of the diseases, and the work that is being done to understand more. We want to send big love to the entire Penn FTD Center Team for jumping in feet first,…
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Disinhibition, Impulse Control & Hypersexuality with Dr. Katya Rascovsky, Penn FTD Center
45:52
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In our last episode before our mid-season break, we talk to the incredible Dr. Katya Rascovsky about some of the most heartbreaking behaviors in FTD: disinhibition, impulse control and hypersexuality. Katya is absolutely brilliant, kind, and we learned so much from her. We'll see you back here on March 5th, when we'll start to dive into the second …
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Understanding Primary Progressive Aphasia with Naomi Nevler, MD
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This week we dive into more of Maria's experience with her mom as we discuss Primary Progressive Aphasia (PPA) with Naomi Nevler, MD from the Penn FTD Center. We had the chance to spend time with Naomi on our visit to Penn last fall, and her passion for science and her understanding and compassion for our community, we feel, is all felt through th…
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Ritualistic Behaviors with Gillian Bradley MA, BSN, RN, Penn FTD Center
40:11
40:11
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This week we tackle ritualistic behaviors with Gillian Bradley MA, BSN, RN from the Penn FTD Center. Gillian works with caregivers and families to understand ritualistic and compulsive behaviors and come up with strategies for managing them. Ritualistic behaviors can include things like constant pacing, repeating the same phrases, eating the same f…
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Understanding Aggression and Agitation in FTD with Dr. Jeff Maneval, Neurologist at the Penn FTD Center
44:05
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In this episode, we dive into the challenging behaviors of Agression, Agitation... and also Paranoia. Past guest and friend of the podcast, Evan, recalls his experience caring for his mother, and trying to protect her reputation with her best friend. Then we pair the science -- Dr. Jeff Maneval, Neurologist at the Penn FTD Center AND Assistant Prof…
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Apathy with Lauren Massimo, PhD, CRNP, Co-Director of the Penn FTD Center
52:46
52:46
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In this episode, we tackle one of the most common FTD symptoms, apathy. We do this first with Maria's Mother's best friend Melina, who shares the apathy she witnessed at the beginning of Lia's disease that left her feeling so confused. Then we pair the science -- Lauren Massimo, co-director of the Penn FTD Center, and someone who has been studying …
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Intro to Season 8 with Dr. David Irwin, Co-Director of the Penn FTD Center
34:00
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We are so thrilled to be back behind the mic for SEASON 8! (I know!! Crazy, right??). We launch this innovative season, where we match the stories to the science, with our new pal – Dr. David Irwin. Dr. Irwin gives us a broad overview of what FTD is and what is generally seen after a diagnosis. Dr. Irwin does a fantastic job explaining what is happ…
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The tale has finally been told. Tune in to hear all the ins and outs of Remember Me's first tour... and we hope this light bonus episode helps get you through the holiday week. Take care, friends. xx, R+M ... Special thank you to our sponsor, Make Time Wellness! Remember Me listeners get 20% off all products with promo code REMEMBER ME. Shop here: …
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To honor Frank on the 3rd anniversary of his passing, we are re-releasing our very first episode... and with a little intro / checkin from your favorite duo. Stay tuned for a BRAND NEW bonus episode next week... and for all things RM, visit our website remembermeftd.com or our instagram @remembermepodcast... and if you're in need of extra podcasts,…
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BONUS EP: Adventures, Sky Cries + BIG PLANS for World FTD Awareness Week
31:16
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SURPRISE! We miss you all + we're here to fill you in on our upcoming adventure. We hope you enjoy this BONUS episode! LEARN MORE ABOUT THE TOUR FOR FTD WORLD AWARENESS WEEK: www.remembermeftd.com/tourof3cities Connect with us on IG: @remembermepodcast Learn more about Re-Members Only here. Sign up for our Newsletter here. --- Support this podcast:…
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An Update on FTD Research with Dr. Brad Boeve
47:05
47:05
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We close out season 7 with an update on FTD research from world renown neurologist Dr. Bradley Boeve. Dr. Boeve shares the importance advocacy and awareness in pushing research forward, and what he is hopeful is on the horizon for our community. If you've enjoyed this season, please connect with us on instagram @remembermepodcast, on our website. I…
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Rachael asks herself the question, "Do I want to know my genetic status?" Make sure you listen til the end for a very special clip... and tune in next week for our season finale with Dr. Brad Boeve. Thank you for listening! Let us know what you think of this episode by connecting with us on instagram @remembermepodcast, on our website, or by joinin…
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A physician shares his family's journey with FTD clinical trials. There are so many things to think about when getting involved in research and/or enrolling in a clinical trial, and this listener wanted to share his insight and learnings in case it could help other families navigate this journey. We are so thankful for his insight and his hope... a…
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Our friend Lauren from across the pond joins us to share her mother Lesley's journey with FTD. Lauren takes us through the search for answers as to her mother's change in behavior - and the parts of her mothers life that made it hard to decipher what the culprit was. She also dives into her journey with genetic testing and the things she thinks abo…
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Linde returns this week to dive into her journey with genetic testing following her mother Allison's passing. This may be one of the most raw conversations we've ever had on Remember Me. Thank you, Linde for being so vulnerable and honest. This episode is inspiring on so many levels -- and stay tuned for a very special letter at the end. Thank you …
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And we're back with our 100th episode (!) of Remember Me with fierce FTD advocate and friend of the podcast, Linde. Linde bravely shares her mother Allison's journey with FTD. Linde covers it all -- the 7 year struggle to get a diagnosis and the 'treacherous' search for resources and support. But above all, Linde shares her love for her mom, and he…
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What is it like to work with a Genetic Counselor?
46:47
46:47
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Laynie Dratch of Penn Medicine comes onto the podcast to answer all of our burning questions about working with a genetic counselor. We loved chatting with her so much that we may need to follow up with a part 2! Let us know what other questions you have for Laynie on our episode art on instagram @remembermepodcast. A list of resources mentioned in…
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Remember Sarah? The listener who inspired this season's theme? Today is her episode! This is a super-sized episode, because not only do we talk all about Sarah's mother Julie's journey with FTD, and the stories of Julie's life... but of course, Sarah also came to share her experience of investigating her genetic status. And as the incredible advoca…
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This week our guest Peggy openly shares the experience of living with the knowledge of testing positive for the Frontotemporal Degeneration (FTD) GRN mutation. Peggy always knew of a long family history of dementia, spanning back 3 generations... and shares her experience witnessing her father's journey with FTD. We get into Peggy's experience with…
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Rachael shares her mother Mary's journey with FTD - Primary Progressive Aphasia - and also reveals her own personal journey of undergoing genetic testing and the brave steps she's taking to advance research. You do not want to miss this episode! Thank you for listening! Let us know what you think of this episode by connecting with us on instagram @…
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Wanda chronicles her mother Sarah's dementia journey in the 1980s - receiving the (mis)diagnosis of Alzheimer's at the age of 52. Sarah went on to become somewhat of a poster child for early-onset Alzheimer's, being profiled in LIFE Magazine, only for her family to realize many years later that it was in fact Frontotemporal Dementia - and it was af…
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We're back for another season, and our main focus this season is GENETICS. In today's episode we dive into: - The latest news in the FTD world: Bruce Wills' diagnosis. - A recap of how Remember Me began, mostly for new listeners! - A window into what to expect this season. Thank you for listening - we can't wait to share this season with you! Stay …
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In our Season 6 finale, Maria bookends the season with a retelling of her mom's story -- over 2 years later. We chat all about how as time passes... our perspective, our grief, and our focus changes. Thank you for your support this season. It has been one for the books! We love you all + can't wait for what's ahead! Stay tuned by following us on in…
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ISFTD in France: All About FTD Research with Penny Dacks
26:10
26:10
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This week's we share an interview we did at the International Society for Frontotemporal Dementias (ISFTD) Conference in Lille, France with Penny Dacks, AFTD's Senior Director of Scientific Initiatives. We focus on providing information about the many forms of research and how to get involved. Penny Dacks holds a Ph.D. in neuroscience from the Univ…
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Our Experience at the International FTD Conference in France
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41:08
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You finally get to hear all about our trip to the International Society for Frontotemporal Dementias (ISFTD) Conference in Lille, France. This episode focuses on our experience - and our perspective attending the conference as advocates and former caregivers. A few things mentioned this episode: Our Abstract that we presented on the Psychosocial Ef…
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Stephanie shares her experience with her mother's journey with FTD and the role reversal that comes with caring for a parent diagnosed with FTD. Steph's incredible strength and vulnerability in sharing this very recent diagnosis + journey we KNOW will be inspiring to all who listen. Thank you, Stephanie for sharing Connie with us. Connect with us o…
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Expert Chat: Advanced Care Planning with Katie Brandt, Director of Caregiver Support Services at MGH FTD Unit
30:04
30:04
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Let's welcome Katie Brandt back to Remember Me to speak on a very important topic - Advanced Care Planning. Sounds scary, huh? Rest assured that Katie breaks it down in a digestable, reassuring way. You'll want to take notes on this one, you guys! Katie, Thank you for making the dark a little brighter and advocating for the importance of this proce…
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We're wheels up and on our way! Listen to learn more about our plans for the International Society for Frontotemporal Dementias (ISFTD) Conference in Lille, France! Connect with us on instagram @remembermepodcast and let us know what you want to learn about our time at ISFTD! --- Thank you to the sponsor of this episode and Season 6, LearnFTD. Lear…
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This week's story comes to us all the way from the U.K. Kit shares her journey with her mother Gloria's Behavioral Variant FTD. Kit's way of articulating this journey had us feeling moved and inspired... and her reading at the end may be our favorite one yet. Connect with us on instagram @remembermepodcast and let us know what you thought of today'…
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Today we are joined by Mike, who shares his family history of FTD. Mike was a young boy in grammar school when his father started to change. He shares how he saw it impact his whole family... and all the while not knowing it was even FTD. Mike then opens up about another family member sadly recently diagnosed with this disease. And we think Mike's …
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Expert Chat: All About Grief with Dr. Erica Srinivasan
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Today we are joined by Dr. Erica Srinivasan to talk all about our "favorite" topic... grief. Anticipatory grief, ambiguous loss, coping strategies, and more... and of course we focus in on the unique grief experience that is the FTD Journey. Dr. Erica G. Srinivasan is an Associate Professor of Psychology at the University of Wisconsin—La Crosse, wh…
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Maria's friend Evan joins the girls this week to share the story of his mother Diomi's journey with Primary Progressive Aphasia. This is our first ever Mother/Son story on Remember Me... and Evan is the perfect storyteller. Throughout this episode you will feel like you're in the room with Evan and his family as he so beautifully captures the exper…
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It's World FTD Awareness week and we are honored to present an interview with talented model and incredible advocate, Nicole Petrie. We are in awe of this young and fierce advocate who's daily videos of her mother Cheryl captured the hearts of 1 Million TikTok followers - helping to shed a light on FTD and the caregiving experience. Nicole's advoca…
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Rachael tells the story of her father Frank's journey with Behavioral Variant FTD from a fresh new perspective... 2 years after our first episode of Remember Me. Connect with us on instagram @remembermepodcast and let us know what you thought of today's episode. --- Thank you to the sponsor of this episode and Season 6, LearnFTD. LearnFTD is workin…
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FTD Research Mini-Series: All About Fluid Biomarkers with Dr. Adam Boxer of UCSF
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It's our last episode of our dementia research mini-series! And as a follow up to our recap of Day 4, we interviewed Dr. Adam Boxer to learn more about fluid biomarkers - AKA - we ask him all about what the bloodwork and lumbar puncture is used for. Stay tuned for a very special ending of our 8-part series. Thank you for coming on the journey with …
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IT'S OUR LAST DAY OF RESEARCH! WE DID IT! As you know at this point in the mini-series -- we participated in the ALLFTD Study -- Rachael as the participant, and Maria as the study partner... and today's episode recaps our Day 4: The Lumbar Puncture. A long day, but we had a lot of laughs, bonding moments... and some disco music. Everything is an ad…
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FTD Research Mini-Series: All About FTD with Dr. Brad Boeve of the Mayo Clinic
45:59
45:59
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As a follow up to our recap of Day 3, we interviewed world-renowned Dr. Brad Boeve to learn more about what we know about Frontotemporal Dementia, and what we're learning through the ALLFTD Study. Dr. Brad Boeve is a professor of neurology in the Mayo Clinic College of Medicine and Science and is a consultant in the Department of Neurology and Cent…
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It's DAY 3! And there were a few surprises! As you know at this point in the mini-series -- we participated in the ALLFTD Study -- Rachael as the participant, and Maria as the study partner... and today's episode recaps our Day 3: The Visit with the Physician to review the Neuropsych testing and the MRI. A long day, but we had a lot of laughs. Ever…
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FTD Research Mini-Series: All About MRIs with Dr. Howie Rosen of UCSF
25:35
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As a follow up to our recap of Day 2, we interviewed Dr. Howie Rosen to learn more about MRIs and how they're used in the ALLFTD Study and in diagnosing FTD. Dr. Howie Rosen, is a behavioral neurologist and holds the Dorothy Kirsten French Foundation Endowed Professorship for Parkinsonian and Other Neurodegenerative Disorders. He is an investigator…
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It's MRI Day! Our FTD Research mini-series continues! As you know at this point in the mini-series -- we participated in the ALLFTD Study -- Rachael as the participant, and Maria as the study partner... and today's episode recaps our Day 2: The MRI. A long day, but we had a lot of laughs. Everything is an adventure with us, so be sure to listen! Wa…
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