Podcasts about frontotemporal dementia ftd

We're tackling the question - Should I get genetic testing?We have the incredible return guest - Erynn Gordon, CGC, program manager at Progranulin Information Navigator. We also brought on some incredible advocates in the FTD Community - Annika from Cure MAPT FTD, Jackie & Wanda from CureGRN and Michael from End the Legacy to share their personal experiences and thought processes around genetic testing.Let us know what you think when you listen. - R+MA VERY special thank you to today's sponsors Progranulin Information Navigator and Psilera. FTD Genetic Resources:Progranulin Information NavigatorCure MAPT FTDCureGRNEnd The Legacy - ALS & FTDFTD Disorders RegistryThe Penn FTD Center Genetics ResourcesThe AFTD Genetics OverviewThe National Society of Genetic CounselorsUCSF Memory Familial FTD PageWant to support the podcast + get more content? Join us on ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Patreon⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠! You get exclusive content + a space to share and connect with others. ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠www.patreon.com/remembermecommunity⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ If you're curious about anything RM, we'd love to connect with you on ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram, and visit ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠our website at⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ www.remembermeftd.com⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠, all the latest updates! ------Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.

Today we talk about 'the end' - our experiences, our fears + how peaceful it ended up being. We call in our friend Katie Duncan, nurse practitioner, educator and founder of Death Care Coach. and she so gently explains what happens to the body in the final days, hours + minutes. And above all letting us know that the body knows exactly what to do.Help us de-stigmatize the conversation around death and dying by sharing this episode.Let us know what you think when you listen. xx-r+mYou can now watch us on ⁠⁠YOUTUBE⁠⁠! Special thanks to our sponsors: Psilera⁠ + Progranulin Information NavigatorWant to support the podcast + get more content? Join us on ⁠⁠⁠⁠⁠⁠⁠⁠⁠Patreon⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠! You get exclusive content + a space to share and connect with others. ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠www.patreon.com/remembermecommunity⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ If you're curious about anything RM, we'd love to connect with you on ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram, and visit ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠our website at⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ www.remembermeftd.com⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠, all the latest updates! ------Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.

We talk about the type of grief we feel like people don't understand: Anticipatory Grief. Losing someone bit by bit, and always waiting for the next change, the next disappointment - and the 'end'...Let us know what you think when you listen. xx-r+mYou can now watch us on ⁠YOUTUBE⁠! Special thanks to Psilera for supporting our work at RM!Want to support the podcast + get more content? Join us on ⁠⁠⁠⁠⁠⁠⁠⁠Patreon⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠! You get exclusive content + a space to share and connect with others. ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠www.patreon.com/remembermecommunity⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ If you're curious about anything RM, we'd love to connect with you on ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram, and visit ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠our website at⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ www.remembermeftd.com⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠, all the latest updates! ------Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.

One of the hardest parts of the wreckage that FTD leaves in its wake is the effect it has on families. In today's episode, we open up about the dynamics that have shifted and changed in our families and friendships - and what we've learned through it all. Listen with an open heart + mind as we dive in. Let us know what you think when you listen, and if you'd like you can now WATCH US ON ⁠YOUTUBE⁠Want to support the podcast + get more content? Join us on ⁠⁠⁠⁠⁠⁠⁠⁠Patreon⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠! You get exclusive content + a space to share and connect with others. ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠www.patreon.com/remembermecommunity⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ If you're curious about anything RM, we'd love to connect with you on ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram, and visit ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠our website at⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ www.remembermeftd.com⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠, all the latest updates! ------Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.

We got robbed. And we want to talk about it. The ways we coped - the ways we didn't. Where we found joy, and where we didn't. The awkwardness of trying to relate to others. And in the end, Rach gives us the perfect Rachaelism related to sandwich caregiving. Let us know what you think when you listen, and if you'd like you can now WATCH US ON YOUTUBE! Want to support the podcast + get more content? Join us on ⁠⁠⁠⁠⁠⁠⁠Patreon⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠! You get exclusive content + a space to share and connect with others. ⁠⁠⁠⁠⁠⁠⁠⁠⁠www.patreon.com/remembermecommunity⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ If you're curious about anything RM, we'd love to connect with you on ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram, and visit ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠our website at⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ www.remembermeftd.com⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠, all the latest updates! ------Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.

“No two caregiving journeys are alike,” writes Emma Heming Willis, the wife of actor Bruce Willis, who was diagnosed in 2023 with Frontotemporal Dementia (FTD), a rare form of dementia affecting behavior, movement and language. “But we are connected by the same unchosen thread.” In The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path, Emma writes movingly and hopefully about the blessings and burdens of being thrust into the role of caregiver, emerging as a passionate voice for care partners and families navigating neurodegenerative disease. Together with her collaborator, Michele Bender, she offers an essential blueprint for others confronting some of the same issues facing her own family. “My grief can still paralyze me,” she shares in the pages of the book she wishes someone had handed her when her husband was first diagnosed. “I still have a hard time accepting what is, yet FTD doesn't give you many options. It can suck all the air out of a room. So I've made a choice to pump oxygen back into our lives, for the sake of our girls, Bruce, and me. And to give the middle finger to this disease.” Join us as we visit with Emma Heming Willis and her co-author Michele Bender for a heartbreaking and heart-lifting conversation on what it takes to tap the universal elements in such a deeply personal story—and what it means to step from an unimaginable darkness at home to stand in the world as a light for others. Learn more about our guests: Emma Heming Willis Website Emma Heming Willis Facebook Emma Heming Willis Instagram Michele Bender Website Michele Bender Instagram Please support the sponsors who support our show: Gotham Ghostwriters' Gathering of the Ghosts Ritani Jewelers Daniel Paisner's Balloon Dog Daniel Paisner's SHOW: The Making and Unmaking of a Network Television Pilot Heaven Help Us by John Kasich Unforgiving: Lessons from the Fall by Lindsey Jacobellis Film Movement Plus (PODCAST) | 30% discount Libro.fm (ASTOLDTO) | 2 audiobooks for the price of 1 when you start your membership Film Freaks Forever! podcast, hosted by Mark Jordan Legan and Phoef Sutton Everyday Shakespeare podcast A Mighty Blaze podcast The Writer's Bone Podcast Network Misfits Market (WRITERSBONE) | $15 off your first order  Film Movement Plus (PODCAST) | 30% discount Wizard Pins (WRITERSBONE) | 20% discount

Welcome to Season 11 - we're reflecting on 5 years of this crazy journey -- meeting by chance, losing our parents, building Remember Me, learning about FTD, healing, research, hope and resilience from amazing people in our community, experts + more. We'll share some of the key themes of the last 5 years, but in a deeper way...and with our own personal stories. We're calling it "Real talk"... Here we go!You can now watch us on YOUTUBE!Want to support the podcast + get more content? Join us on ⁠⁠⁠⁠⁠⁠Patreon⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠! You get exclusive content + a space to share and connect with others. ⁠⁠⁠⁠⁠⁠⁠⁠www.patreon.com/remembermecommunity⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ If you're curious about anything RM, we'd love to connect with you on ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram, and visit ⁠⁠⁠⁠⁠⁠⁠⁠⁠our website at⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ www.remembermeftd.com⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠, all the latest updates! ------Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.

Surprise! Coming to you a few weeks before our Season 11 launch with a BONUS episode to celebrate World FTD Awareness Week. We chatted with Dr. Ryan Darby, director of the Frontotemporal Dementia Clinic in the Department of Neurology at Vanderbilt University Medical Center. He gave us on updates in FTD research - how to get involved & how our advocacy moves research forward.A VERY special thank you to today's sponsor ⁠⁠⁠⁠AVIADOBIO⁠⁠⁠⁠ for making this episode possible! Want more Remember Me? Join us on Patreon⁠⁠⁠⁠⁠⁠You get exclusive content and it's a great way to support the show! ⁠⁠⁠⁠⁠⁠⁠www.patreon.com/remembermecommunity⁠⁠⁠⁠⁠⁠⁠----------If you're curious about anything RM, we'd love to connect with you on ⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram, and visit ⁠⁠⁠⁠⁠⁠our website at⁠⁠⁠⁠⁠⁠⁠⁠⁠ www.remembermeftd.com⁠⁠⁠⁠⁠⁠⁠⁠⁠, all the latest updates! ------Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.

In our Season 10 finale, Alyssa describes the FTD journey with her father, Tommy - starting from her perspective at 11 years-old. She weaves us through her memories of her father's strange behavior - and the long road to finding answers. This story covers so much about family dynamics - but also what a healing journey can look like. And the unbelievable things that happen in life that we just can't explain. Thank you, Alyssa for sharing your story with us. You are an incredible woman. Keep fighting.----------A VERY SPECIAL THANK YOU TO TODAY'S SPONSORS:⁠⁠PROGRANULIN INFORMATION NAVIGATOR⁠⁠ &⁠⁠AVIADOBIO⁠⁠⁠⁠⁠. Mentioned in this episode: Season 9, Episode 15: Grief & Genetic Testing which you can listen to ⁠⁠here⁠⁠.Gonna miss us on the break? Support our podcast and join us on ⁠⁠⁠⁠⁠Patreon⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ - You get exclusive content + a space to share and connect with others. ⁠⁠⁠⁠⁠⁠⁠⁠⁠www.patreon.com/remembermecommunity⁠⁠⁠⁠⁠⁠⁠⁠⁠ If you're curious about anything RM, we'd love to connect with you on ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram, and visit ⁠⁠⁠⁠⁠⁠⁠⁠our website at⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ www.remembermeftd.com⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠, all the latest updates! ------Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.

Dr. Adam a professor of Interpersonal & Family Communication (and host of one of Maria's favorite podcasts The Sister Wives Professor) is here for what may be our favorite expert chat of all time.An open + honest conversation about life, family + grief. We talk a lot about family estrangement, family roles, what it means for someone to "be the glue" and so much more. Thank you, Thank you, Thank you to Adam for all of his love and attention to our community + thank you for coming on to share your insight with us. You can learn more about Dr. Adam's Patreon he mentioned in today's episode here: https://www.patreon.com/thesisterwivesprofessor----------A VERY SPECIAL THANK YOU TO TODAY'S SPONSORS:⁠PROGRANULIN INFORMATION NAVIGATOR⁠ &⁠AVIADOBIO⁠⁠⁠⁠. Mentioned in this episode: Season 9, Episode 15: Grief & Genetic Testing which you can listen to ⁠here⁠.Support our podcast and join us on ⁠⁠⁠⁠Patreon⁠⁠⁠⁠⁠⁠⁠⁠⁠ - You get exclusive content + a space to share and connect with others. ⁠⁠⁠⁠⁠⁠⁠⁠www.patreon.com/remembermecommunity⁠⁠⁠⁠⁠⁠⁠⁠ If you're curious about anything RM, we'd love to connect with you on ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram, and visit ⁠⁠⁠⁠⁠⁠⁠our website at⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ www.remembermeftd.com⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠, all the latest updates! ------Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.

Today's episode features Lauren - who tells the story of her mother Pat's journey with Alzheimer's - PPA and lung cancer. Lauren describes noticing her mother's speech becoming jumbled in August 2022, which led to a challenging path to diagnosis involving family dynamics between her, her two sisters, and their father. Lauren so astutely recounts how navigating the family dynamics helped her recognize their family patterns - and ultimately helped her realize her own strength in showing up for difficult situations.This is such an incredibly raw, deep and meaningful conversation and we are so thankful to Pat for opening up to us. We just know this conversation will help so many. Share it with someone you think needs to hear it. ----------A VERY SPECIAL THANK YOU TO TODAY'S SPONSORS:PROGRANULIN INFORMATION NAVIGATOR &AVIADOBIO⁠⁠⁠. Mentioned in this episode: Season 9, Episode 15: Grief & Genetic Testing which you can listen to here.Support our podcast and join us on ⁠⁠⁠Patreon⁠⁠⁠⁠⁠⁠⁠⁠ - You get exclusive content + a space to share and connect with others. ⁠⁠⁠⁠⁠⁠⁠www.patreon.com/remembermecommunity⁠⁠⁠⁠⁠⁠⁠ If you're curious about anything RM, we'd love to connect with you on ⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram, and visit ⁠⁠⁠⁠⁠⁠our website at⁠⁠⁠⁠⁠⁠⁠⁠⁠ www.remembermeftd.com⁠⁠⁠⁠⁠⁠⁠⁠⁠, all the latest updates! ------Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.

Elder law attorney Patrick Cawley is equipping dementia caregivers with the essential tools they need for estate planning, including advance care planning for end of life. Patrick guides family members as they navigate the health care system and complicated ways to pay for long-term care for their loved one. He is a certified dementia care consultant, and host of the Dementia Empowered podcast.  Patrick has lived experience with a family member who has Frontotemporal Dementia (FTD), so he knows firsthand what dementia caregivers face. Here are some highlights from this episode: Patrick endorses trying care solutions before going straight to legal solutions which might escalate problems and family dynamics. The biggest challenges for dementia caregivers that Patrick sees are financial issues, forming a care team, and complicated or discordant family dynamics.Patrick advocates for caregivers to be paid in certain situations, depending on estate taxes and the financial burden on the caregivers. Recording keeping is vitally important; Patrick recommends keeping a paper trail of transactions and healthcare decisions.  Listen to the Dementia Empowered Podcast here. Connect with Keystone Elder Law here. Connect with Patrick Cawley on LI Find an Elder Law Attorney in your area at naela.org You can find the Approaching Death Support Kit at bkbooks.com. Find all of Barbara Karnes' products and resources at bkbooks.com. Read Barbara's blog at bkbooks.com. Connect with Barbara Karnes on Facebook IG LinkedIn Twitter (X)  YouTube Hospice Navigation Services understands that you need unbiased, expert support to have the best end of life experience possible.  If you have questions about hospice care for yourself or someone you care about, Hospice Navigation Services can help. Whether you want to connect by phone or video, you can book a FREE 30-Minute Hospice Navigation Session, or a more in-depth 60-Minute Navigation Session for $95. If you need to troubleshoot the care you're already receiving, we're here to answer your questions. A 60-Minute Navigation Session by video call allows up to 3 family members to get the same expert information at the same time. We believe you deserve to have good hospice care. Book your session with an expert Hospice Navigator at theheartofhospice.com.   Connect with The Heart of Hospice Podcast and host Helen Bauer Website: theheartofhospice.com Social media: Facebook  Twitter  Instagram LinkedIn

Jackie von Salm, a chemist and Chief Scientific Officer at Psilera, shares her father Terry's journey with FTD. We loved how Jackie was so raw + honest about family dynamics, becoming Terry's POA in her 20s, and how she learned how to be direct + honest in how she felt and what she needed while caregiving. You can learn more about what she's up to at Psilera here. You can also hear us chat all about their Research Summit this year on Patreon - along with an extended version of this episode.Patreon⁠⁠⁠⁠⁠ - join us ⁠⁠⁠⁠⁠www.patreon.com/remembermecommunity⁠⁠⁠⁠⁠ - you get exclusive content and it's a great way to support the show!----------Special thank you to today's sponsor ⁠⁠AVIADOBIO⁠⁠.If you're curious about anything RM, we'd love to connect with you on ⁠⁠⁠⁠⁠⁠⁠⁠Instagram, and visit ⁠⁠⁠⁠⁠our website at⁠⁠⁠⁠⁠⁠⁠⁠ www.remembermeftd.com⁠⁠⁠⁠⁠⁠⁠⁠, all the latest updates! ------Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.

This week's episode dives into the legal side of family dynamics with Elder Law Attorney Jerry Rothkoff. We cover all of our burning legal questions - from POA to Guardianship to Medicaid and Medicare. Jerry gives lots of wisdom on how family dynamics play a role in his job and how he navigates it all.We want to thank Jerry for coming on the podcast but also for supporting our community with so much care and compassion. You can learn more about Rothkoff Law Group here.The association Jerry mentions in today's episode is the Life Care Planning Law Firms Association,  https://www.lcplfa.org/Special thank you to today's sponsor ⁠AVIADOBIO⁠.An extended version of this episode is available now on ⁠⁠⁠Patreon⁠⁠⁠ - join us ⁠⁠⁠www.patreon.com/remembermecommunity⁠⁠⁠ - you get exclusive content and it's a great way to support the show!If you're curious about anything RM, we'd love to connect with you on ⁠⁠⁠⁠⁠⁠⁠Instagram, and visit ⁠⁠⁠⁠our website at⁠⁠⁠⁠⁠⁠⁠ www.remembermeftd.com⁠⁠⁠⁠⁠⁠⁠, all the latest updates! ------Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.

Our inaugural in-law guest on the podcast, Amber, eloquently discusses her experiences as a mother, wife, and caregiver to her father-in-law, Robert. She covers a range of topics, from navigating Medicaid to ensuring Robert's safety—not only in a physical sense but also on social media. It's clear that she has truly gone above and beyond in her role. We thoroughly enjoyed our conversation with Amber and can't wait to hear your thoughts!---Special thank you to today's sponsor AVIADOBIO.An extended version of this episode is available now on ⁠⁠Patreon⁠⁠ - join us ⁠⁠www.patreon.com/remembermecommunity⁠⁠ - you get exclusive content and it's a great way to support the show!If you're curious about anything RM, we'd love to connect with you on ⁠⁠⁠⁠⁠⁠Instagram, and visit ⁠⁠⁠our website at⁠⁠⁠⁠⁠⁠ www.remembermeftd.com⁠⁠⁠⁠⁠⁠, all the latest updates! ------Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.

Christy found a way to navigate her father's FTD diagnosis with poise -- From fighting for a diagnosis to navigating 4 different Memory Care facilities... Christy seemed to go above and beyond to provide the best loving care for her dad. What was so apparent to us - was how naturally she adapted to his reality - always keeping his personhood at the forefront of her mind. But it was not without so much sacrifice and grief - sharing how deeply the disease impacted her family. But ultimately we saw Christy's story as the most amazing example for her children of devotion and service - and what we do for the people we love.Thank you for sharing your story with us, Christy. You are an amazing daughter + advocate.An extended version of this episode is available now on ⁠Patreon⁠ - join us ⁠www.patreon.com/remembermecommunity⁠ - you get exclusive content and it's a great way to support the show!If you're curious about anything RM, we'd love to connect with you on ⁠⁠⁠⁠⁠Instagram, and visit ⁠⁠our website at⁠⁠⁠⁠⁠ www.remembermeftd.com⁠⁠⁠⁠⁠, all the latest updates! ------Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.

Today's episode feels like a conversation between 3 old friends. New friend, Genessee, openly shares her unique experience with her mother's complex mental health issues and her eventual diagnosis of frontotemporal dementia (FTD). For the first time we really dive into the topic of infertility -- and what it's like to navigate a fertility journey alongside the grief and challenges having a loved one with FTD. We loved this conversation - and the special peice of Holly at the end. Thank you, Genessee for sharing your story with us!An extended version of this episode is available now on Patreon - join us www.patreon.com/remembermecommunity - you get exclusive content and it's a great way to support the show!If you're curious about anything RM, we'd love to connect with you on ⁠⁠⁠⁠Instagram, and visit ⁠our website at⁠⁠⁠⁠ www.remembermeftd.com⁠⁠⁠⁠, all the latest updates! ------Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.

Continuing on our theme of family dynamics - a long-time listener and friend of the podcast, CJ, comes forward to share her story. We talk a lot about navigating motherhood alongside her father Russ' FTD journey, with all the family dynamics and challenges that come along the way. CJ tells her story with so much love and honesty, it is sure to touch your heart. Thank you, CJ, for sharing your story with us.If you're curious about anything RM, we'd love to connect with you on ⁠⁠PATREON⁠⁠, our website at⁠⁠ www.remembermeftd.com⁠⁠, or on Instagram for all the latest updates!Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.

“I was in therapy, that was a lifeline.” - Allyson SchrierThis is a powerful one! Natalie and JJ sit down with Allyson Schrier as she opens up about her deeply personal and emotional journey caring for her husband, who was diagnosed with Frontotemporal Dementia (FTD).Allison candidly shares the early signs of FTD, the heartbreaking misdiagnosis, and the uphill battle of navigating a complex healthcare system. From the shifting family dynamics to the emotional weight of caregiving, this conversation pulls back the curtain on what it really means to care for a loved one with dementia.

A young son and family member from NYT Magazine's “The Vanishing Family” speaks with us on today's episode. In what may be one of our most powerful interviews, Ansel shares the origins of his mother Peggy's journey with FTD and their family's discovery of the MAPT FTD mutation through their incredible efforts to contribute to FTD research. You can read Ansel's recent piece A Hand of Poker and Our Family Curse published in Medium here. Learn more about Ansel's advocacy at CureMAPTFTD ⁠here⁠.Thank you, Ansel for sharing your story with us.------If you're curious about anything RM, we'd love to connect with you on ⁠PATREON⁠, our website at⁠ www.remembermeftd.com⁠, or on Instagram for all the latest updates!Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.

A beautiful blended family-- Janet's husband Mike was diagnosed with FTD during the pandemic -- and she shares with us how she navigates the heartache and grief through the beautiful blended family her and Mike formed together. Janet thought it was important this season featured a story of how families can come together too -- and we're so glad. Thank you, Janet for sharing your story with us and the whole RM community.If you're curious about anything RM, we'd love to connect with you on ⁠PATREON⁠, our website at⁠ www.remembermeftd.com⁠, or on Instagram for all the latest updates!Thinking about joining our Family Dynamics class in May? We'd be happy to chat—just drop us an email at hello@remembermeftd.com for more details.Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.

In this powerful and deeply personal episode of Connected Parenting, I sit down with Sonia Cacciacarro —registered psychotherapist and member of the Connected Parenting team—for an honest and compassionate conversation about grief, loss, and how to talk to children about death and dying.Sonia shares her journey from fitness expert and mom of three to psychotherapist, and how her husband's diagnosis and passing from FTD and ALS shaped her passion for helping families navigate bereavement and loss. Together, we explore why our culture struggles with death, why it's so hard for parents to talk about it with their kids, and how we can support our children (and ourselves) through the grieving process.Whether you're walking through grief right now or want to build the emotional resilience your child will one day need, this episode offers deep insights, practical strategies, and loving support for some of life's hardest moments.Jennifer's Takeaways:Sonia's Journey into Grief and Death Counseling (02:38)The Importance of Talking About Death and Dying (04:14)Children's Understanding and Coping with Death (16:48)Navigating Social Interactions and Support Systems (17:09)The Role of Empathy and Sympathy in Grief (17:30)Preparing Children for Future Losses (18:37)The Impact of Cultural and Personal Beliefs on Grief (20:10)Conclusion and Final Thoughts (27:30)Meet Sonia Cacciacarro Sonia began her career in the health and fitness industry, working in corporate fitness and country clubs before launching her own fitness consulting and personal training business. After becoming a mother of three, she transitioned to being a stay-at-home mom. This period of family life led her to a journey of self-discovery, ultimately guiding her to pursue a career in psychotherapy.Sonia became a Registered Psychotherapist in 2016, founding her own private practice, and joined the Connected Parenting team in 2018, where she works with children, teens, adults, couples, and families. In April 2021, Sonia's life took a dramatic turn when her husband was diagnosed with Frontotemporal Dementia (FTD) and ALS. She took a break from her practice to care for him until he died in October 2022. Sonia credits her education, work experience, and personal resilience for helping her navigate this challenging period. Now, her professional focus has expanded to helping families cope with grief, bereavement, death, and dying.Website: https://therapybysonia.ca/Instagram: https://www.instagram.com/therapybysonia/Facebook: https://www.facebook.com/profile.php?id=100063605529221#LinkedIn: https://www.linkedin.com/in/sonia-cacciacarro-275292127/Meet Jennifer KolariJennifer Kolari is the host of the “Connected Parenting” weekly podcast and the co-host of “The Mental Health Comedy” podcast. Kolari is a frequent guest on Nationwide morning shows and podcasts in th US and Canada. Her advice can also be found in many Canadian and US magazines such as; Today's Parent, Parents Magazine and Canadian Family.Kolari's powerful parenting model is based on the neurobiology of love, teaching parents how to use compassion and empathy as powerful medicine to transform challenging behavior and build children's emotional resilience and emotional shock absorbers.Jennifer's wisdom, quick wit and down to earth style help parents navigate modern-day parenting problems, offering real-life examples as well as practical and effective tools and strategies.Her highly entertaining, inspiring workshops are shared with warmth and humour, making her a crowd-pleasing speaker with schools, medical professionals, corporations and agencies throughout North America, Europe and Asia.One of the nation's leading parenting experts, Jennifer Kolari, is a highly sought- after international speaker and the founder of Connected Parenting. A child and family therapist with a busy practice based in San Diego and Toronto, Kolari is also the author of Connected Parenting: How to Raise A Great Kid (Penguin Group USA and Penguin Canada, 2009) and You're Ruining My Life! (But Not Really): Surviving the Teenage Years with Connected Parenting (Penguin Canada, 2011).

We plunge head first into family dynamics with our extraordinary guest, Niki. Niki shares the story of her father, Dominic, detailing his journey with FTD - including the difficulties of balancing the reality and gravity of the diagnosis alongside the overwhelming decisions for his care. All while navigating family conflicts, and of course, the emotional and psychological toll it takes. Niki talks all about her journey as a new mom and new entrepreneur while navigating it all. We bond over the survival mode of it all - and learning how to trust your gut, establish boundaries, and find your "people". Thank you to Niki for sharing your story with us and the whole RM community.If you're curious about anything RM, we'd love to connect with you on PATREON, our website at www.remembermeftd.com, or on Instagram for all the latest updates!Thinking about joining our Family Dynamics class in May? We'd be happy to chat—just drop us an email at hello@remembermeftd.com for more details.Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.

Send us a textWendy Williams "You Know What I Mean"Wendy Williams & Guardianship ControversyKey Points:Wendy's Call to Charlamagne Tha God: Wendy Williams called into his radio show, stating she is not cognitively impaired but is being held in a facility.Facility Details: She has been in a New York assisted living facility (5th-floor memory care unit) for 8 months. She can make calls but cannot receive them. No access to a cell phone, computer, or iPad.Guardianship Concerns:GinaLisa Monterroso (Connect Care Advisory Founder) questions why Wendy is under guardianship, stating no professional has assessed her condition.Rosanna Scotto (News Anchor & Friend) has seen Wendy at her worst but believes she is at her best now and should not be in a locked facility.Alex Finne (Wendy's Niece): Thought Wendy was moving into an apartment in NYC. She is now isolated and trying to share her story.Financial Issues & Guardianship Origins:Wendy's son, Kevin Hunter Jr., mismanaged her money, including spending $113,000 on a boat.Wells Fargo froze her accounts after failing to contact her, triggering the guardianship.Legal Battle: No clear explanation for why Wendy remains under guardianship for three years.Judicial & Guardian Actions:The judge authorized Wendy's guardian to profit from her assets.Documents are sealed, and Wendy has never been reassessed.A lawsuit with Lifetime & A&E may be restricting her communication.Cognitive Health Debate:Wendy was reportedly drinking heavily during her documentary.Diagnosed with aphasia and possible Frontotemporal Dementia (FTD), but experts suggest alcohol-induced dementia could be reversible.She hasn't seen a doctor in over 18 months.Wendy's Mental & Emotional State:Friends and family claim she sounds like her old self.She wants her freedom back and someone else to manage her money.Wants to visit her 94-year-old father in Miami, which she finally did on February 15th.Recent Interview (Jan 20th) with Harvey Levin:Wendy displayed sharp memory, recalling Donald Trump as the 47th president and past encounters with celebrities.Made comments about Diddy ("prison for life") and JLo ("a good girl until she's not").Talked about relationships, cheating, and wanting to date again in NYC. Court Decision (Sept 2024):The judge ruled her son cannot manage her finances, but a new guardian is yet to be assigned.TakeawaysWendy Williams feels trapped and imprisoned in her current situation.There are concerns about her mental health and possible misdiagnosis.Family dynamics play a significant role in Wendy's life and decisions.The conservatorship has raised questions about her autonomy and rights.Wendy's cognitive state appears to be better than previously reported.The importance of having a sober coach for recovery is emphasized.Wendy's son has been involved in questionable financial decisions.The role of care managers is crucial in ensuring proper healthcare.There is a significant concern about the motivations of those around Wendy.Support the showhttps://www.wewinewhenever.com/

Surprise... another BONUS ep! The grief convo in Season 9, we felt, really needed to include the genetic piece of this disease, and so we are HONORED to have Erynn Gordon - a board certified genetic counselor with 20 years of clinical, research, and industry experience with us to dive into this topic. Erynn SO thoughtfully breaks down genetics and testing and chats with us all about a new resource the Progranulin Information Navigator. Let us know what you think of this bonus episode and please check out our sponsor ⁠⁠⁠⁠⁠⁠PROGRANULIN INFORMATION NAVIGATOR⁠⁠⁠⁠⁠⁠ A resource for FTD clinical trial and genetic testing info. For all things Remember Me, visit remembermeftd.com For bonus content + connection, join us on Patreon www.patreon.com/remembermecommunity --- Remember Me is a podcast that shares stories of people with Frontotemporal Dementia (FTD) and their loved ones. The podcast's goal is to help people accept the good in life and to remember the people they love for who they were before the disease. 

Katie's mom was just 62 when she was diagnosed with frontotemporal dementia.  The diagnosis catapulted her family into the world of caregiving and learning about this lesser known form of dementia.  Katie Prentiss is an award winning actress and filmmaker.  She is currently working on a feature film called “Wake Up Maggie” which is a love letter to her mom.  You can reach Katie at her website https://www.katieprentiss.com or Instagram @wakeupmaggiemovie.  You can also help Katie raise FTD awareness by supporting her go fund me.  Some of the highlights Katie shares:Frontotemporal dementia [FTD] is a lesser known type of dementia that is often misdiagnosed as depression, menopause, alcoholism, or delusional disorderThe unusual symptoms of FTD - this is not like the typical memory loss of Alzheimer's FTD is the most common type of dementia for people under 65The reality of saying a "slow goodbye" to someone you loveThe reality of being catapulted into caregivingWhy we need additional research about FTDRaising awareness through filmThe concept of "unraveling" by peeling back the layers that don't serve us anymore - becoming more authenticLearning to focus on what we can control Dealing with caregiver guiltFeeling overwhelmed as a caregiverLearning to be compassionate with yourself as a caregiverAcceptance is where peace liesLiving with the thought, "What if it happens to me"Living a life filled with peace and fulfillment rather than fear and regretAnd morePlease share, subscribe, leave a rating and review, visit the Linda's Corner website at lindascornerpodcast.com and/or follow on youtube, facebook, instagram, and pinterest @lindascornerpodcast. Thanks!Also please visit the Hope for Healing website at hopeforhealingfoundation.org for free resources to increase happiness, build confidence and self esteem, improve relationships, manage stress, and calm feelings of depression and anxiety.   Become the champion of your own story as you overcome your challenges.  

Frontotemporal Dementia (FTD) is a younger-onset form of dementia often mistaken for Alzheimer's disease. Join me and my guests Sharon Hall and Amy Johnson for a candid discussion about their life-changing journeys having spouses diagnosed with this common form of dementia. Their stories will inspire you!

The most common type of dementia is Alzheimer's disease, and we hear a lot about it. However, there are several types of dementia less likely to get the spotlight, but that still impact hundreds of thousands of individuals and their families. Join this webinar for an exploration of the lesser-known dementias. In this episode, we'll navigate the complexities of Lewy Body Dementia (LBD), Frontotemporal Dementia (FTD), Vascular Dementia, and Mixed Dementia. Listen to this podcast to gain a deeper understanding of the unique challenges and characteristics associated with each type, so you are empowered to enhance care and support for individuals affected by these various forms of dementia.

In this episode of the Life Science Success Podcast, host Don Davis, PhD, MBA, interviews Dr. William Chou of Passage Bio. Dr. Chou discusses his transition from a practicing physician to a leader in biotechnology, reflects on the profound patient relationships he misses, and shares insights into Passage Bio's work on gene therapy for neurodegenerative diseases like Frontotemporal Dementia (FTD). They delve into the progress of their Phase 1/2 clinical study, the urgency of developing treatments for genetic mutations, and the potential impact on patients and their families.   Learn about the most recent developments and how Passage Bio is working to give those suffering from these life-threatening conditions hope.   00:00 Welcome and Introduction 00:25 William's Journey into Life Sciences 01:30 The Emotional Impact of Leaving Clinical Practice 02:31 Overview of Passage Bio 02:52 Understanding Frontotemporal Dementia (FTD) 06:38 Current Progress and Future Prospects 10:04 The Urgency and Hope for FTD Treatments 11:37 Goals and Closing Remarks

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

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 for a very special tribute to Peggy's father, Jerry! 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

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 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://anchor.fm/rememberme/support

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 to our very first story of the season told by this fierce and incredible FTD advocate, Wanda. 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://anchor.fm/rememberme/support

Learn about the Disease Affecting Bruce WillisBruce Willis' family put out a statement about his diagnosis with Frontotemporal dementia we thought it would be a good time to talk about this disease. It is a complicated disease, so we divided our chat about this illness into two podcasts. This week we will talk about what frontotemporal dementia does to the body and next week we will explore management of it.In this Episode:02:28 - Aboriginal Death Customs06:30 - Recipe of the Week, Anzac Biscuits08:14 - Frontotemporal Dementia (FTD)25:11 - Nick Cave and the Red Hand Files28:56 - OutroPlease return next week for Part 2 in this series.Follow us on Facebook | Instagram | Email us at mail@every1dies.orgClick on this link to Rate and Review our podcast!

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, 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://anchor.fm/rememberme/support

After visiting five different doctors to finally get an accurate diagnosis of Frontotemporal Dementia (FTD), our guest Laurie Scherrer found herself feeling lost and hopeless. She felt invisible, alone, and unsure about the rest of her life. That is, until she took her diagnosis into her own hands and found resources, support, and a new outlook on her life. This conversation with Laurie will inspire anyone on the dementia journey to stop wasting time and start having a happy life.

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 series by reaching out to us on our website! www.remembermeftd.com Adam L. Boxer, MD, PhD, is Endowed Professor in Memory and Aging in the Department of Neurology at the University of California, San Francisco (UCSF). He directs UCSF's Neurosciences Clinical Research Unit and the Alzheimer's Disease and Frontotemporal Degeneration (FTD) Clinical Trials Program at the UCSF Memory and Aging Center. Dr. Boxer's research is focused on developing new treatments and biomarkers for neurodegenerative diseases, particularly those involving tau and TDP-43. Dr. Boxer received his medical and doctorate degrees as part of the NIH-funded Medical Scientist Training Program at New York University Medical Center. He completed an internship in Internal Medicine at California Pacific Medical Center, a residency in Neurology at Stanford University Medical Center, followed by a fellowship in behavioral neurology at UCSF. We loved Dr. Boxer! Enjoy the science side of our experience, you guys! -- Special thank you to the ALLFTD Study for their support in the creation of this series. You can support Remember Me by visiting our website www.remembermeftd.com where you can shop our merch, join re-members only or donate. You can follow us on instagram @remembermepodcast. ---- Today's sponsor is The Bluefield Project: The Bluefield Project to Cure FTD, is on a mission to support research to improve our understanding of a genetic form of Frontotemporal dementia, and to help find a cure for this devastating disease. So how can you help? If FTD runs in your family, participating in a Natural History Study, or in a therapeutic clinical trial, makes an enormous contribution. To learn more, please go to ftdregistry.org ---- 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." --- Support this podcast: https://anchor.fm/rememberme/support

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 Rochester, Minnesota. Dr. Boeve is a co-director of the Clinical Core of Mayo's Alzheimer's Disease Research Center. Dr. Boeve is recognized with the distinction of the Little Family Foundation Professorship in Lewy Body Dementia. And he is one of the three ALLFTD Principal Investigators. We loved Dr. Boeve! Enjoy the science side of our experience, you guys! Special thank you to the ALLFTD Study for their support in the creation of this series. You can support Remember Me by visiting our website www.remembermeftd.com where you can shop our merch, join re-members only or donate. You can follow us on instagram @remembermepodcast. ---- Today's sponsor is The Bluefield Project: The Bluefield Project to Cure FTD, is on a mission to support research to improve our understanding of a genetic form of Frontotemporal dementia, and to help find a cure for this devastating disease. So how can you help? If FTD runs in your family, participating in a Natural History Study, or in a therapeutic clinical trial, makes an enormous contribution. To learn more, please go to ftdregistry.org ---- 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." --- Support this podcast: https://anchor.fm/rememberme/support

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 on multiple federal and state-funded research grants and serves as director of the California State Alzheimer's Disease Center at UCSF, associate director of UCSF's federally funded Alzheimer's Disease Research Center, director of UCSF's Behavioral Neurology Training Program, and director of Curriculum for the Global Brain Health Institute. And, he is one of the three ALLFTD Principal Investigators. We loved Dr. Rosen! Enjoy the science side of our experience, you guys! Special thank you to the ALLFTD Study for their support in the creation of this series. You can support Remember Me by visiting our website www.remembermeftd.com where you can shop our merch, join re-members only or donate. You can follow us on instagram @remembermepodcast. ---- Today's sponsor is The Bluefield Project: The Bluefield Project to Cure FTD, is on a mission to support research to improve our understanding of a genetic form of Frontotemporal dementia, and to help find a cure for this devastating disease. So how can you help? If FTD runs in your family, participating in a Natural History Study, or in a therapeutic clinical trial, makes an enormous contribution. To learn more, please go to ftdregistry.org ---- 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." --- Support this podcast: https://anchor.fm/rememberme/support

As a follow up to our recap of Day 1, we interviewed Steve Smith to learn more about Neuropsych testing. Steve explains what it's like to administer these tests, what they're looking for during testing and how this intensive battery aids in distinguishing an FTD diagnosis. Steve Smith is a Senior Program Coordinator at the Mayo Clinic with 12 years of experience in research and neuropsychological testing. Steve oversees research coordination, psychometric testing, and daily operations of the Alzheimer's Disease Research Center. Enjoy the science side of our experience, you guys! Special thank you to the ALLFTD Study for their support in the creation of this series. You can support Remember Me by visiting our website www.remembermeftd.com where you can shop our merch, join re-members only or donate. You can follow us on instagram @remembermepodcast. ---- Today's sponsor is The Bluefield Project: The Bluefield Project to Cure FTD, is on a mission to support research to improve our understanding of a genetic form of frontotemporal dementia, and to help find a cure for this devastating disease. So how can you help? If FTD runs in your family, participating in a Natural History Study, or in a therapeutic clinical trial, makes an enormous contribution. To learn more, please go to ftdregistry.org ---- 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." --- Support this podcast: https://anchor.fm/rememberme/support

Today's the day we tell you some big news! And afterward, ALLFTD Study Program Directors Leah Forsberg, Ph.D. and Hilary Heuer, Ph.D. dive into some basics on FTD research - what does it look like? Who can participate? You'll learn all about the difference between observational studies and clinical trials... and get a window into some exciting work on the horizon. Listen + let us know what you think on instagram! We will miss you all during our "break" -- thank you for your support this season. xx-R+M -------------------- Want more Remember Me? Join Re-Members Only. -------------------- TODAY'S SPONSORS: THE ALGERNON PROJECT: Their mission is to eradicate the misdiagnosis of individuals affected by FTD by utilizing a machine learning algorithm to streamline the patient diagnosis journey. Learn more about this special project on LinkedIn and Instagram @thealgernonproject. FOR THEIR THOUGHTS FOUNDATION: For Their Thoughts Foundation is hosting an inaugural Care For Their Thoughts Benefit event in Carlsbad, CA on Saturday April 30th. At the event, guests will have the opportunity to walk through interactive exhibits that help us understand the dementia experience, walk in a caregivers shoes and learn about brain health. All event proceeds will bring direct financial relief and resources to families caring for their loved ones with dementia through our Care For the Caregivers Grant Program. You can buy tickets for their event on Saturday, April 30th at www.fortheirthoughts.org/careftt or on instagram @fortheirthoughts. Want more Remember Me? Join our Re-Members Only Space for extra podcasts, events + more at www.remembermeftd.com/joinro ---------------------------------------- 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." --- Support this podcast: https://anchor.fm/rememberme/support

Today's episode is brought to you by The Algernon Project. The Algernon Project founders Ben and Keri Allen walk us through the long and hard fought journey of receiving a Frontotemporal Dementia (FTD) diagnosis for Keri's father, Mark. They explain how this heartbreaking experience of constant misdiagnosis motivated them to explore an algorithm to assist radiologists in spotting subtle brain atrophy. As our season is coming to an end, we feel it's a beautiful thing to share how a young couple has taken their trauma experience and channeled their talents into healing and helping others. Take a listen and follow them on social media to follow along on their journey to raise awareness for FTD and eradicate misdiagnosis of FTD @algernonproject. -- -------------------- Want more Remember Me? Join our Re-Members Only Space for extra podcasts, events + more at www.remembermeftd.com/joinro -------------------- TODAY'S SPONSOR: THE ALGERNON PROJECT: Their mission is to eradicate the misdiagnosis of individuals affected by FTD by utilizing a machine learning algorithm to streamline the patient diagnosis journey. Learn more about this special project on LinkedIn and Instagram @thealgernonproject. ---------------------------------------- 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." --- Support this podcast: https://anchor.fm/rememberme/support

Today's story is told from the sibling perspective of the FTD journey and it's full of confusion, sorrow - but also sweet sisterly love. Today, we hear from Brianna, founder of Waverles, as she lovingly tells the story of her older sister, Daria. Daria's progression was severe and swift, leaving a family in shock of what had just happened - and the complexity of the global pandemic on top of it all. Daria - wife, mother, daughter - and incredible social worker of 17 years - touched so many lives in her short time on this earth.