Our Experience at the International FTD Conference in France by Remember Me

Season Finale: In Conclusion...with Rachael + Maria

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

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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.

Understanding Guardianship, Power of Attorney + More with Kate Lietz, MSW, LSW

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.

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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.

Disease Trajectory with Lauren Massimo, PhD, CRNP, Co-Director of the Penn FTD Center

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

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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.

Understanding Hyperorality and Alcohol Use with Dr. Sara Manning, Penn FTD Center

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.

Understanding Loss of Empathy with Dr. Emma Rhodes

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.

Understanding FTD and ALS with Corey McMillan, Phd, Co-Director of the Penn FTD Center

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.

Disinhibition, Impulse Control & Hypersexuality with Dr. Katya Rascovsky, Penn FTD Center

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.

Understanding Primary Progressive Aphasia with Naomi Nevler, MD

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.

Ritualistic Behaviors with Gillian Bradley MA, BSN, RN, Penn FTD Center

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.

Understanding Aggression and Agitation in FTD with Dr. Jeff Maneval, Neurologist at the Penn FTD Center

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.

Apathy with Lauren Massimo, PhD, CRNP, Co-Director of the Penn FTD Center

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.

Intro to Season 8 with Dr. David Irwin, Co-Director of the Penn FTD Center

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.

The Tale of The Tour of 3 Cities

The tale has finally been told. Tune in to hear all the ins and outs of Remember Me's first tour...

and we hope this light bonus episode helps get you through the holiday week. Take care, friends. xx, R+M

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Special thank you to our sponsor, Make Time Wellness! Remember Me listeners get 20% off all products with promo code REMEMBER ME.

Shop here: https://maketimewellness.com/

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For more Remember Me content in between seasons, join us over at instagram @remembermepodcast, join us in Re-Members Only, or checkout our website www.remembermeftd.com

BONUS: Re-Release of Frankie

To honor Frank on the 3rd anniversary of his passing, we are re-releasing our very first episode... and with a little intro / checkin from your favorite duo.

Stay tuned for a BRAND NEW bonus episode next week... and for all things RM, visit our website remembermeftd.com or our instagram @remembermepodcast... and if you're in need of extra podcasts, we have 40+ bonus exclusive episodes available on Re-Members Only. Re-Members Only helps fuel our business and gives you more of the content you love: remembermeftfd.com/joinro

BONUS EP: Adventures, Sky Cries + BIG PLANS for World FTD Awareness Week

SURPRISE! We miss you all + we're here to fill you in on our upcoming adventure. We hope you enjoy this BONUS episode!

LEARN MORE ABOUT THE TOUR FOR FTD WORLD AWARENESS WEEK: www.remembermeftd.com/tourof3cities

Connect with us on IG: @remembermepodcast

Learn more about Re-Members Only here.

Sign up for our Newsletter here.

An Update on FTD Research with Dr. Brad Boeve

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.

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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.

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⁠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."

Do I Want To Know My Status?

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!

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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.

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⁠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 M Family

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!

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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."

Lesley

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!

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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."

Allison, Pt. 2

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!

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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."

Allison, Pt. 1

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!

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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."

What is it like to work with a Genetic Counselor?

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.

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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."

Julie

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."

Testing Positive: Peggy's Journey

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!

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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.

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⁠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."

Mary

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!

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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.

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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."

Sarah

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!

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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.

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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."

Welcome to Season 7

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!

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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.

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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."

Lia

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.

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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.

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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."

ISFTD in France: All About FTD Research with Penny Dacks

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:

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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.

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

"Always, always, accept the good."

Our Experience at the International FTD Conference in France

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

A few things mentioned this episode:

Our Abstract that we presented on the Psychosocial Effects of FTD on Families can be read and viewed here.
Here is the conference day-by-day program of events, if you are curious to follow along in some of the speakers we mentioned including Dr. Marsel Mesulam.
Our new Caregiver Input Survey

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

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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.

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

"Always, always, accept the good."

Expert Chat: Advanced Care Planning with Katie Brandt, Director of Caregiver Support Services at MGH FTD Unit

Let's welcome Katie Brandt back to Remember Me to speak on a very important topic - Advanced Care Planning.

Sounds scary, huh? Rest assured that Katie breaks it down in a digestable, reassuring way. You'll want to take notes on this one, you guys! Katie, Thank you for making the dark a little brighter and advocating for the importance of this process. We absolutely adore you!

Today Katie Referenced:

The Conversation: A Revolutionary Plan for End-of-Life Care by Angelo E. Volandes M.D.
The National Academy of Elder Law Attorneys
Interested in learning more about the Caregiver Study Katie mentioned? E-mail her at: Katherine.Brandt@mgh.harvard.edu

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Connect with us on instagram @remembermepodcast and let us know what you think of today's episode. If you want to learn more about Katie, please visit her website here.

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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.

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

"Always, always, accept the good."

Frank

Rachael tells the story of her father Frank's journey with Behavioral Variant FTD from a fresh new perspective... 2 years after our first episode of Remember Me.

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

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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.

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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."

FTD Research Mini-Series: All About Fluid Biomarkers with Dr. Adam Boxer of UCSF

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!

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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.

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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

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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."

FTD Research Mini Series: Day 4

IT'S OUR LAST DAY OF RESEARCH! WE DID IT!

As you know at this point in the mini-series -- we participated in the ALLFTD Study -- Rachael as the participant, and Maria as the study partner... and today's episode recaps our Day 4: The Lumbar Puncture.

A long day, but we had a lot of laughs, bonding moments... and some disco music. Everything is an adventure with us, so be sure to listen! Want to learn more about ALLFTD? Visit allftd.org Be sure to connect with us on instagram @remembermepodcast to let us know what you think of today's episode!

------ Special Thanks To Our Sponsor: 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. There are now four investigational therapies in clinical trials for progranulin-FTD. 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

---- To learn more about Remember Me, visit remembermeftd.com

#dementiaresearch

FTD Research Mini-Series: All About FTD with Dr. Brad Boeve of the Mayo Clinic

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.

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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

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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."

FTD Research Mini Series: Day 3

It's DAY 3! And there were a few surprises!

As you know at this point in the mini-series -- we participated in the ALLFTD Study -- Rachael as the participant, and Maria as the study partner... and today's episode recaps our Day 3: The Visit with the Physician to review the Neuropsych testing and the MRI. A long day, but we had a lot of laughs. Everything is an adventure with us, so be sure to listen! Want to learn more about ALLFTD? Visit allftd.org Be sure to connect with us on instagram @remembermepodcast to let us know what you think of today's episode!

------ Special Thanks To Our Sponsor: 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. To achieve our mission, we have supported over 40 researchers at Universities across the world, to understand the science behind FTD caused by mutations in progranulin. We, along with NIH and others, help fund studies of families affected by FTD. These studies are called Natural History Studies and follow participants over time, to better understand how FTD may develop, and to identify clues that may help us treat it. Based in part on our research findings, a number of companies are developing therapeutics that target progranulin FTD. There are now four investigational therapies in clinical trials for progranulin-FTD. 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

---- To learn more about Remember Me, visit remembermeftd.com

FTD Research Mini-Series: All About MRIs with Dr. Howie Rosen of UCSF

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.

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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."

FTD Research Mini-Series: Day 2

It's MRI Day! Our FTD Research mini-series continues!

As you know at this point in the mini-series -- we participated in the ALLFTD Study -- Rachael as the participant, and Maria as the study partner... and today's episode recaps our Day 2: The MRI. A long day, but we had a lot of laughs. Everything is an adventure with us, so be sure to listen!

Want to learn more about ALLFTD? Visit allftd.org

Be sure to connect with us on instagram @remembermepodcast to let us know what you think of today's episode!

------

Special Thanks To Our Sponsor: 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.

To achieve our mission, we have supported over 40 researchers at Universities across the world, to understand the science behind FTD caused by mutations in progranulin.

We, along with NIH and others, help fund studies of families affected by FTD. These studies are called Natural History Studies and follow participants over time, to better understand how FTD may develop, and to identify clues that may help us treat it.

Based in part on our research findings, a number of companies are developing therapeutics that target progranulin FTD. There are now four investigational therapies in clinical trials for progranulin-FTD.

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

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To learn more about Remember Me, visit remembermeftd.com

FTD Research Mini-Series: All About Neuropsych Testing with Psychometrist Steve Smith

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.

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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."

FTD Research Mini-Series: Day 1

It's finally here! Our FTD Research Mini Series.

We participated in the ALLFTD Study -- Rachael as the participant, and Maria as the study partner... and today's episode recaps our Day 1. It was filled with Consent Forms, Blood Work and Neuropsych Testing... and also a recap of our little adventures.

Want to learn more about ALLFTD? Visit allftd.org

Be sure to connect with us on instagram @remembermepodcast to let us know what you think of today's episode!

------

Special Thanks To Our Sponsor: 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.

To achieve our mission, we have supported over 40 researchers at Universities across the world, to understand the science behind FTD caused by mutations in progranulin.

We, along with NIH and others, help fund studies of families affected by FTD. These studies are called Natural History Studies and follow participants over time, to better understand how FTD may develop, and to identify clues that may help us treat it.

Based in part on our research findings, a number of companies are developing therapeutics that target progranulin FTD. There are now four investigational therapies in clinical trials for progranulin-FTD.

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

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To learn more about Remember Me, visit remembermeftd.com

Season Finale: Big News + Research 101

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

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Want more Remember Me? Join Re-Members Only.

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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

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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."

Special Episode: The Road To Diagnosis with The Algernon Project

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.

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Want more Remember Me? Join our Re-Members Only Space for extra podcasts, events + more at www.remembermeftd.com/joinro

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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.

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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."

Daria

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.

When you listen to this episode, let us know what you think on instagram.

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Join Re-Members Only.

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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

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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."

Remember Me

By Remember Me Podcast

Available on