Remember Me

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."

The Remember Me Podcast + Community provides resources, connection and understanding for families, caregivers and people affected by Frontotemporal Dementia. For all things RM, join us over on ⁠⁠⁠⁠⁠⁠⁠PATREON⁠⁠⁠⁠⁠⁠⁠, visit our website www.remembermeftd.com or follow us on Instagram!

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."

The Remember Me Podcast + Community provides resources, connection and understanding for families, caregivers and people affected by Frontotemporal Dementia. For all things RM, join us over on ⁠⁠⁠⁠⁠⁠⁠PATREON⁠⁠⁠⁠⁠⁠⁠, visit our website www.remembermeftd.com or follow us on Instagram!

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."

____

The Remember Me Podcast + Community provides resources, connection and understanding for families, caregivers and people affected by Frontotemporal Dementia. For all things RM, join us over on ⁠⁠⁠⁠⁠⁠⁠PATREON⁠⁠⁠⁠⁠⁠⁠, visit our website www.remembermeftd.com or follow us on Instagram!

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."

____

The Remember Me Podcast + Community provides resources, connection and understanding for families, caregivers and people affected by Frontotemporal Dementia. For all things RM, join us over on ⁠⁠⁠⁠⁠⁠⁠PATREON⁠⁠⁠⁠⁠⁠⁠, visit our website www.remembermeftd.com or follow us on Instagram!

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."

____

The Remember Me Podcast + Community provides resources, connection and understanding for families, caregivers and people affected by Frontotemporal Dementia. For all things RM, join us over on ⁠⁠⁠⁠⁠⁠⁠PATREON⁠⁠⁠⁠⁠⁠⁠, visit our website www.remembermeftd.com or follow us on Instagram!

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."

____

The Remember Me Podcast + Community provides resources, connection and understanding for families, caregivers and people affected by Frontotemporal Dementia. For all things RM, join us over on ⁠⁠⁠⁠⁠⁠⁠PATREON⁠⁠⁠⁠⁠⁠⁠, visit our website www.remembermeftd.com or follow us on Instagram!

In our Season 6 finale, Maria bookends the season with a retelling of her mom's story -- over 2 years later.

We chat all about how as time passes... our perspective, our grief, and our focus changes. 

Thank you for your support this season. It has been one for the books! We love you all + can't wait for what's ahead! 

Stay tuned by following us on instagram @remembermepodcast or joining Re-Members Only.

---

Thank you to the sponsor of this episode and Season 6, LearnFTD. LearnFTD is working to raise awareness of FTD gene mutations that can cause FTD and the importance of genetic testing. Visit LearnFTD.com for information and more resources on FTD, such as a discussion guide for talking with a doctor about the disease and a tips sheet for caregivers. You can also follow LearnFTD on Facebook and Instagram @LearnFTD.

---

For more FTD resources, our blog, Re-Members Only and more, visit our website www.remembermeftd.com

Learn more about our trip to the International FTD Conference ISFTD on our website www.remembermeftd.com/france

"Always, always, accept the good."

____

The Remember Me Podcast + Community provides resources, connection and understanding for families, caregivers and people affected by Frontotemporal Dementia. For all things RM, join us over on ⁠⁠⁠⁠⁠⁠⁠⁠PATREON⁠⁠⁠⁠⁠⁠⁠⁠, visit our website www.remembermeftd.com or follow us on Instagram!

This week's we share an interview we did at the International Society for Frontotemporal Dementias (ISFTD) Conference in Lille, France with Penny Dacks, AFTD's Senior Director of Scientific Initiatives. We focus on providing information about the many forms of research and how to get involved. 

Penny Dacks holds a Ph.D. in neuroscience from the University of Arizona. As AFTD’s Senior Director of Scientific Initiatives, Dr. Dacks leads strategy for AFTD’s research programs and serves as President of the FTD Disorders Registry.

A few things mentioned this episode:

---

Thank you to the sponsor of this episode and Season 6, LearnFTD. LearnFTD is working to raise awareness of FTD gene mutations that can cause FTD and the importance of genetic testing. Visit LearnFTD.com for information and more resources on FTD, such as a discussion guide for talking with a doctor about the disease and a tips sheet for caregivers. You can also follow LearnFTD on Facebook and Instagram @LearnFTD.

---

For more FTD resources, our blog, Re-Members Only and more, visit our website www.remembermeftd.com

"Always, always, accept the good."

____

The Remember Me Podcast + Community provides resources, connection and understanding for families, caregivers and people affected by Frontotemporal Dementia. For all things RM, join us over on ⁠⁠⁠⁠⁠⁠⁠⁠PATREON⁠⁠⁠⁠⁠⁠⁠⁠, visit our website www.remembermeftd.com or follow us on Instagram!

You finally get to hear all about our trip to the International Society for Frontotemporal Dementias (ISFTD) Conference in Lille, France. This episode focuses on our experience - and our perspective attending the conference as advocates and former caregivers. 

A few things mentioned this episode:

Connect with us on instagram @remembermepodcast and let us know what you thought of today's episode.

---

Thank you to the sponsor of this episode and Season 6, LearnFTD. LearnFTD is working to raise awareness of FTD gene mutations that can cause FTD and the importance of genetic testing. Visit LearnFTD.com for information and more resources on FTD, such as a discussion guide for talking with a doctor about the disease and a tips sheet for caregivers. You can also follow LearnFTD on Facebook and Instagram @LearnFTD.

---

For more FTD resources, our blog, Re-Members Only and more, visit our website www.remembermeftd.com

"Always, always, accept the good."

____

The Remember Me Podcast + Community provides resources, connection and understanding for families, caregivers and people affected by Frontotemporal Dementia. For all things RM, join us over on ⁠⁠⁠⁠⁠⁠⁠⁠PATREON⁠⁠⁠⁠⁠⁠⁠⁠, visit our website www.remembermeftd.com or follow us on Instagram!

Stephanie shares her experience with her mother's journey with FTD and the role reversal that comes with caring for a parent diagnosed with FTD.

Steph's incredible strength and vulnerability in sharing this very recent diagnosis + journey we KNOW will be inspiring to all who listen.

Thank you, Stephanie for sharing Connie with us. 

Connect with us on instagram @remembermepodcast and let us know what you thought of today's episode.

We just want to note a trigger warning that there is mention of attempted suicide in this episode. 988 Suicide & Crisis Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals in the United States. When people call, text, or chat 988, they will be connected to trained counselors that are part of the existing Lifeline network. 

---

Thank you to the sponsor of this episode and Season 6, LearnFTD. LearnFTD is working to raise awareness of FTD gene mutations that can cause FTD and the importance of genetic testing. Visit LearnFTD.com for information and more resources on FTD, such as a discussion guide for talking with a doctor about the disease and a tips sheet for caregivers. You can also follow LearnFTD on Facebook and Instagram @LearnFTD.

---

For more FTD resources, our blog, Re-Members Only and more, visit our website www.remembermeftd.com

Learn more about our trip to the International FTD Conference ISFTD on our website www.remembermeftd.com/france

"Always, always, accept the good."

____

The Remember Me Podcast + Community provides resources, connection and understanding for families, caregivers and people affected by Frontotemporal Dementia. For all things RM, join us over on ⁠⁠⁠⁠⁠⁠⁠⁠PATREON⁠⁠⁠⁠⁠⁠⁠⁠, visit our website www.remembermeftd.com or follow us on Instagram!