Remember Me

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 about as she awaits her mother's results. Above all,...

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. UPDATE! Linde Jacobs was recently featured in the Ne...

And we're back with our 100th episode (!) of Remember Me with fierce FTD advocate and friend of the podcast, Linde Jacobs. 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 her determination to care for...

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 this episode are all linked here on our blog . L...

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 advocate she is - Sarah shares all the steps she took be...

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 research, her feelings around understanding her g...

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 @remembermepodcast, on our website, or by joining...

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 affecting many members of their large family. Listen...

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 in touch with us on instagram @remembermepodcast ,...

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 instagram @remembermepodcast or joining Re-Members...

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 University of Arizona. As AFTD’s Senior Director of...

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 Effects of FTD on Families can be read and viewed h...

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 on instagram @remembermepodcast and let us know wh...

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 process. We absolutely adore you! Today Katie Referenc...

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. LearnFTD is working to raise awareness of FTD gene mut...

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's episode. --- Thank you to the sponsor of this...

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 openness about the FTD experience - how he copes...

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, where she also serves as the Director for the Ce...

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 experience and the boundless love his mother showed f...

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 advocacy continued this summer as she was a featured mo...

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 working to raise awareness of FTD gene mutations that ca...

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 us and please let us know what you think of this s...

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 adventure with us, so be sure to listen! Want to le...

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 Center for Sleep Medicine at the Mayo Clinic in Roches...

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. Everything is an adventure with us, so be sure to lis...