Remember Me

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 sharing their stories.  For more support, resources, events, and all things RM, check out our website www.remembermeftd.com Special thank you to The Association for Frontotemporal Degeneration for their collaboration and support of our blogs this season! You can read up on all the important information + resources we curated together here. Remember Me is proud to work with ⁠⁠⁠⁠⁠⁠LearnFTD⁠⁠⁠⁠⁠⁠, by Alector in working to raise awareness of FTD.. For additional information and resources, visit ⁠⁠⁠⁠⁠⁠LearnFTD.com⁠⁠⁠⁠⁠ Thank you for supporting our work and for supporting the FTD community.  --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

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 Keri for the amazing job she did caring for her dad...all while being a wife, raising her little kids and being a fierce FTD advocate. You're a superhero, Keri. -- 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 for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website ⁠⁠⁠remembermeftd.com⁠⁠⁠. The companion blog to this episode can be read ⁠⁠⁠here⁠⁠⁠. Special thank you to The AFTD for their collaboration and support of these blogs! Remember Me is proud to work with ⁠⁠⁠⁠⁠LearnFTD⁠⁠⁠⁠⁠, by Alector in working to raise awareness of FTD.. For additional information and resources, visit ⁠⁠⁠⁠⁠LearnFTD.com ⁠⁠⁠⁠⁠ Thank you for supporting our work and for supporting the FTD community.  --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

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 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 for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website ⁠⁠remembermeftd.com⁠⁠. The companion blog to this episode can be read ⁠⁠here⁠⁠. Special thank you to The AFTD for their collaboration and support of these blogs! Remember Me is proud to work with ⁠⁠⁠⁠LearnFTD⁠⁠⁠⁠, by Alector in working to raise awareness of FTD.. For additional information and resources, visit ⁠⁠⁠⁠LearnFTD.com ⁠⁠⁠⁠ Thank you for supporting our work and for supporting the FTD community.  --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

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 for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website ⁠⁠⁠⁠⁠⁠⁠⁠remembermeftd.com⁠⁠⁠⁠⁠⁠⁠⁠. The companion blog to this episode can be read ⁠⁠⁠⁠⁠⁠⁠⁠here⁠⁠⁠⁠⁠⁠⁠⁠. Special thank you to The AFTD for their collaboration and support of these blogs! Remember Me is proud to work with ⁠⁠⁠LearnFTD⁠⁠⁠, by Alector in working to raise awareness of FTD.. For additional information and resources, visit ⁠⁠⁠LearnFTD.com ⁠⁠⁠ Thank you for supporting our work and for supporting the FTD community.  --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

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 stories.  Please see below for links mentioned in the show and a direct link to our informative companion blog for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website ⁠⁠⁠⁠⁠⁠⁠remembermeftd.com⁠⁠⁠⁠⁠⁠⁠. The companion blog to this episode can be read ⁠⁠⁠⁠⁠⁠⁠here⁠⁠⁠⁠⁠⁠⁠. Special thank you to The AFTD for their collaboration and support of these blogs! Remember Me is proud to work with ⁠⁠LearnFTD⁠⁠, by Alector in working to raise awareness of FTD.. For additional information and resources, visit ⁠⁠LearnFTD.com ⁠⁠ Thank you for supporting our work and for supporting the FTD community.  --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

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 link to our informative companion blog for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website ⁠⁠⁠⁠⁠⁠remembermeftd.com⁠⁠⁠⁠⁠⁠. The companion blog to this episode can be read ⁠⁠⁠⁠⁠⁠here⁠⁠⁠⁠⁠⁠. Special thank you to The AFTD for their collaboration and support of these blogs! Remember Me is proud to work with ⁠LearnFTD⁠, by Alector in working to raise awareness of FTD.. For additional information and resources, visit ⁠LearnFTD.com ⁠ Thank you for supporting our work and for supporting the FTD community.  --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

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 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 for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website ⁠⁠⁠⁠⁠remembermeftd.com⁠⁠⁠⁠⁠. The companion blog to this episode can be read ⁠⁠⁠⁠⁠here⁠⁠⁠⁠⁠. Special thank you to The AFTD for their collaboration and support of these blogs! And a special thank you to ⁠⁠⁠⁠⁠Alector⁠⁠⁠⁠⁠ for their boundless work in the neurodegenerative space. Powered by innovation, exquisite science and a determination to make a difference, Alector is working on the discovery and development of potential therapeutic treatments in the hopes of improving the lives of patients, caregivers and families living with neurodegenerative diseases. Remember Me Podcast is appreciative of all your support of our work.  --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

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 your favorite duo. 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 for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website ⁠⁠⁠⁠remembermeftd.com⁠⁠⁠⁠. The companion blog to this episode can be read ⁠⁠⁠⁠here⁠⁠⁠⁠. Special thank you to The AFTD for their collaboration and support of these blogs! And a special thank you to ⁠⁠⁠⁠Alector⁠⁠⁠⁠ for their boundless work in the neurodegenerative space. Powered by innovation, exquisite science and a determination to make a difference, Alector is working on the discovery and development of potential therapeutic treatments in the hopes of improving the lives of patients, caregivers and families living with neurodegenerative diseases. Remember Me Podcast is appreciative of all your support of our work.  --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

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 what is happening in the brain as well as shares some learnings from families in clinic. 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 for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website ⁠⁠⁠remembermeftd.com⁠⁠⁠. The companion blog to this episode can be read ⁠⁠⁠here⁠⁠⁠. Special thank you to The AFTD for their collaboration and support of these blogs! And a special thank you to ⁠⁠⁠Alector⁠⁠⁠ for their boundless work in the neurodegenerative space. Powered by innovation, exquisite science and a determination to make a difference, Alector is working on the discovery and development of potential therapeutic treatments in the hopes of improving the lives of patients, caregivers and families living with neurodegenerative diseases. Remember Me Podcast is appreciative of all your support of our work.  --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

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 MANY ideas for support. Most importantly, with so much compassion for families effected. We were truly touched by his approach. You will not want to miss the blog associated with this episode here. 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 for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website ⁠⁠remembermeftd.com⁠⁠. The companion blog to this episode can be read ⁠⁠here⁠⁠. Special thank you to The AFTD for their collaboration and support of these blogs! And a special thank you to ⁠⁠Alector⁠⁠ for their boundless work in the neurodegenerative space. Powered by innovation, exquisite science and a determination to make a difference, Alector is working on the discovery and development of potential therapeutic treatments in the hopes of improving the lives of patients, caregivers and families living with neurodegenerative diseases. Remember Me Podcast is appreciative of all your support of our work.  --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

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 aspect of FTD. 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 for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website ⁠remembermeftd.com⁠. The companion blog to this episode can be read ⁠here⁠. Special thank you to The AFTD for their collaboration and support of these blogs! And a special thank you to ⁠Alector⁠ for their boundless work in the neurodegenerative space. Powered by innovation, exquisite science and a determination to make a difference, Alector is working on the discovery and development of potential therapeutic treatments in the hopes of improving the lives of patients, caregivers and families living with neurodegenerative diseases. Remember Me Podcast is appreciative of all your support of our work.  --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

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 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 for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website remembermeftd.com. The companion blog to this episode can be read here. Special thank you to The AFTD for their collaboration and support of these blogs! And a special thank you to Alector for their boundless work in the neurodegenerative space. Powered by innovation, exquisite science and a determination to make a difference, Alector is working on the discovery and development of potential therapeutic treatments in the hopes of improving the lives of patients, caregivers and families living with neurodegenerative diseases. Remember Me Podcast is appreciative of all your support of our work.  --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

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 and more. --- Thank you to our sponsor of this episode and Season 7, ⁠LearnFTD⁠. LearnFTD is working to raise awareness of gene mutations in FTD and the importance of genetic testing. Visit ⁠LearnFTD.com⁠ for information and resources on FTD, genetics, and a video providing an overview of genetic testing and counseling. You can also follow LearnFTD on ⁠Facebook⁠ and ⁠Instagram⁠ @LearnFTD. --- ⁠Remember Me⁠ is a podcast created by two moms who became fast friends on Instagram while caregiving for their parents. 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." "Always, always, accept the good." --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

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 mutations in FTD and the importance of genetic testing. Visit ⁠LearnFTD.com⁠ for information and resources on FTD, genetics, and a video providing an overview of genetic testing and counseling. You can also follow LearnFTD on ⁠Facebook⁠ and ⁠Instagram⁠ @LearnFTD. --- ⁠Remember Me⁠ is a podcast created by two moms who became fast friends on Instagram while caregiving for their parents. 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." "Always, always, accept the good." --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

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 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 mutations in FTD and the importance of genetic testing. Visit ⁠LearnFTD.com⁠ for information and resources on FTD, genetics, and a video providing an overview of genetic testing and counseling. You can also follow LearnFTD on ⁠Facebook⁠ and ⁠Instagram⁠ @LearnFTD. --- ⁠Remember Me⁠ is a podcast created by two moms who became fast friends on Instagram while caregiving for their parents. 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." "Always, always, accept the good." --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

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 clear to see THAT was the most important thing to Lesley. 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 mutations in FTD and the importance of genetic testing. Visit ⁠LearnFTD.com⁠ for information and resources on FTD, genetics, and a video providing an overview of genetic testing and counseling. You can also follow LearnFTD on ⁠Facebook⁠ and ⁠Instagram⁠ @LearnFTD. --- ⁠Remember Me⁠ is a podcast created by two moms who became fast friends on Instagram while caregiving for their parents. 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." "Always, always, accept the good." --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

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 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 mutations in FTD and the importance of genetic testing. Visit ⁠LearnFTD.com⁠ for information and resources on FTD, genetics, and a video providing an overview of genetic testing and counseling. You can also follow LearnFTD on ⁠Facebook⁠ and ⁠Instagram⁠ @LearnFTD. --- ⁠Remember Me⁠ is a podcast created by two moms who became fast friends on Instagram while caregiving for their parents. 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." "Always, always, accept the good." --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

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 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 genetic testing in "Allison, Pt. 2". 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 mutations in FTD and the importance of genetic testing. Visit ⁠LearnFTD.com⁠ for information and resources on FTD, genetics, and a video providing an overview of genetic testing and counseling. You can also follow LearnFTD on ⁠Facebook⁠ and ⁠Instagram⁠ @LearnFTD. --- ⁠Remember Me⁠ is a podcast created by two moms who became fast friends on Instagram while caregiving for their parents. 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." "Always, always, accept the good." --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

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 in Philadelphia, PA, specializing in Frontotemporal Degeneration (FTD) spectrum disorders.  She helps families with adult-onset conditions such as FTD, Amyotrophic Lateral Sclerosis (ALS), Alzheimer’s Disease (AD), and others, navigate genetic testing options and cope with their diagnoses through research and clinical encounters. Her research interests include the lived experiences of individuals with or at risk of developing FTD, issues in predictive genetic testing, and genetic counseling access and service delivery. She is a co-founder of the annual Penn Familial FTD/ALS Conference, as well as the co-founder and chair of the ALS/FTD Working Group within the National Society of Genetic Counselors. Laynie graduated summa cum laude from Colgate University with a BA in neuroscience and a minor in psychology. She completed her master’s in genetic counseling at the Johns Hopkins University and the National Institutes of Health. --- Thank you to our sponsor of this episode and Season 7, ⁠⁠LearnFTD⁠⁠. LearnFTD is working to raise awareness of gene mutations in FTD and the importance of genetic testing. Visit ⁠⁠LearnFTD.com⁠⁠ for information and resources on FTD, genetics, and a video providing an overview of genetic testing and counseling. You can also follow LearnFTD on ⁠⁠Facebook⁠⁠ and ⁠⁠Instagram⁠⁠ @LearnFTD. --- ⁠⁠Remember Me⁠⁠ is a podcast created by two moms who became fast friends on Instagram while caregiving for their parents. 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." "Always, always, accept the good." --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

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 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 mutations in FTD and the importance of genetic testing. Visit ⁠LearnFTD.com⁠ for information and resources on FTD, genetics, and a video providing an overview of genetic testing and counseling. You can also follow LearnFTD on ⁠Facebook⁠ and ⁠Instagram⁠ @LearnFTD. --- ⁠Remember Me⁠ is a podcast created by two moms who became fast friends on Instagram while caregiving for their parents. 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." "Always, always, accept the good." --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support