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 @wearehfc on Instagram because there's even more content there (+ more to come) about our trip and our heart to hearts in the car about all things caregi...
Aug 23, 2024•42 min
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 share + DON'T FORGET to follow us @remembermepodcast and @wearehfc on Instagram because there's even more content there (+ more to come) about our...
Aug 15, 2024•32 min
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 for some more bonus episodes from our trip. BUT DON'T FORGET to follow us @remembermepodcast and @wearehfc on Instagram because there's even more...
Aug 15, 2024•48 min
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. not? -How does brain donation support research? -How do we make research more accessible? Research and clinical trials are such an important aspect o...
Jun 20, 2024•36 min•Season 8Ep. 14
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 the considerations for families? Benefit vs. Burden Research and clinical trials are such an important aspect of our advocacy and we are thrilled to br...
Jun 20, 2024•58 min•Season 8Ep. 13
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 -- We want to thank the entire Penn FTD Center Team for jumping in feet first, to our sponsors for their support and to our guests for openly...
Apr 16, 2024•53 min•Season 8Ep. 12
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. We recorded this interview last fall, and in February, Mark passed away after a very long journey with FTD. We want to take a minute to acknowledge K...
Apr 09, 2024•56 min•Season 8Ep. 11
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 the Sister Project . Hear their stories told on Season 1 episodes "June" and "June Pt. 2. This episode is dedicated to June. xx -- We want to send bi...
Mar 26, 2024•38 min•Season 8Ep. 10
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 to our guests for openly sharing their stories. Please see below for links mentioned in the show and a direct link to our informative companion blog fo...
Mar 19, 2024•41 min•Season 8Ep. 9
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 Penn FTD Center Team for jumping in feet first, to our sponsors for their support and to our guests for openly sharing their storie...
Mar 12, 2024•45 min•Season 8Ep. 8
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, to our sponsors for their support and to our guests for openly sharing their stories. Please see below for links mentioned in the show and a direct l...
Mar 05, 2024•37 min•Season 8Ep. 7
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 half of Season 8. Take time to digest the first 6 episodes of our season with care. Read the blogs for more info. We want to send big love to the enti...
Feb 13, 2024•46 min•Season 8Ep. 6
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 the episode. We hope this helps you gain deeper insight into PPA... and we hope you appreciate some raw and unfiltered thoughts on the subject from you...
Feb 06, 2024•50 min•Season 8Ep. 5
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 foods, walking the same routes, and more... and Gillian helps us to understand a little bit more about the patterns of behavior and how it relates to w...
Jan 30, 2024•40 min•Season 8Ep. 4
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 Professor at UPenn, helps us better understand the "why" behind the challenging behaviors of Aggression, Agitation and Paranioa in FTD... and provides MA...
Jan 23, 2024•44 min•Season 8Ep. 3
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 apathy for nearly 20 years, dives into the different aspects of apathy, some suggestions for coping with it, and just a deeper understanding of this a...
Jan 16, 2024•53 min•Season 8Ep. 2
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 happening in the brain, where it’s happening and why it’s happening. What more could we ask for? We want to send big love to the entire Penn FTD Center Te...
Jan 09, 2024•34 min•Season 8Ep. 1
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: https://maketimewellness.com/ .... For more Remember Me content in between seasons, join us over at instagram @remembermepodcast , join us in Re-Memb...
Nov 21, 2023•59 min
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, we have 40+ bonus exclusive episodes available on Re-Members Only. Re-Members Only helps fuel our business and gives you more of the content you lov...
Nov 10, 2023•53 min
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 . ____ The Remember Me Podcast + Community provides resources, connection and understanding for families, caregivers and people affected by Frontotemporal Dementia. For all th...
Sep 12, 2023•31 min
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 . If you miss us in between seasons, consider supporting our podcast by joining Re-Members Only . There are currently over 30 bonus episodes, events ...
May 30, 2023•47 min•Season 7Ep. 12
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 joining Re-Members Only ! --- Thank you to our sponsor of this episode and Season 7, LearnFTD . LearnFTD is working to raise awareness of gene mutatio...
May 23, 2023•51 min•Season 7Ep. 11
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... and salute him for caring for so many members of his family with so much grace and positivity. Thank you for listening! Let us know what you think of t...
May 16, 2023•36 min•Season 7Ep. 10
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, Lauren beautifully illustrates her mother's profound love for her kids and grandkids -- and its clea...
May 09, 2023•59 min•Season 7Ep. 9
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 New York Times - you can read her article here . Thank you for listening! Let us know what you think of this...
May 02, 2023•46 min•Season 7Ep. 8
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 her in the best way she could. Stay tuned for next week's episode where Linde dives into more of her journey with g...
Apr 25, 2023•1 hr 6 min•Season 7Ep. 7
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 . Laynie Dratch, ScM, CGC is a genetic counselor in adult neurology at the University of Pennsylvania i...
Apr 11, 2023•47 min•Season 7Ep. 6
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 before getting tested in hopes that it will help educate others on the process. Thank you for listenin...
Apr 04, 2023•1 hr 8 min•Season 7Ep. 5
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 genetic status, and how she's bonded with her brothers over this shared experience. Wait til the end ...
Mar 28, 2023•40 min•Season 7Ep. 4
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 Re-Members Only ! --- Thank you to our sponsor of this episode and Season 7, LearnFTD . LearnFTD is w...
Mar 21, 2023•50 min•Season 7Ep. 3
