Remember Me

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."

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!

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

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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!

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

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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."

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!

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!

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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

____

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!

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."

____

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!

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

----

To learn more about Remember Me, visit remembermeftd.com

____

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!

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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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."

____

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!

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."

____

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!

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.

<3

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

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Join Re-Members Only.

--------------------

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."

____

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 weeks episode, featuring Betsy Hall - founder and CEO of For Their Thoughts, tells the story of Mary. Described by Betsy being the “mom who knew what you needed before you did,” Mary prided herself on being the Mom with a capital M. This family’s journey has a pretty big twist and Betsy so eloquently describes it.

You don’t want to miss this one.

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:

NANA'S BOOKS: Bring back connection, one page at a time. NANA’S BOOKS pair nostalgic fine art and verse to engage and delight people living with dementia and their care partners. Check out nanasbookseries.com

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."

____

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!