AFTD 2025 Education Conference

Speakers | Agenda | Sponsors

Register Today for AFTD's 2025 Education Conference

Omni Interlocken Hotel | Denver, CO

People diagnosed, care partners, families, friends, healthcare professionals, and researchers are invited to connect with people who understand the journey, learn about available resources and supports, and engage with experts to gain insight on the latest in FTD research and approaches to care.

Date: Thursday, May 1 to Friday, May 2, 2025

Location: in person at the Omni Interlocken Hotel (500 Interlocken Blvd, Broomfield, Colorado, 80021) and online via Zoom

Cost: FREE

Click here to read about navigating the Education Conference virtually on Zoom.

Please consider attending this year’s Conference in person so you can:

On Thursday:
- Attend the Genetic FTD Symposium (1:00-5:00 p.m. MT)
- Connect with other families informally at the Persons with FTD and Care Partner Social (4:30-6:30 p.m. MT)
- Walk through and explore the FTD in the Arts Gallery (12:00-8:00 p.m. MST)
- Experience FTD firsthand. Join a 40-min reTHINK w/ Dementia Live experiential learning workshop to expand your empathy and understanding of FTD (1:30-6:30 pm MT).
On Friday:
- Meet with other families and experts during our breakfast hour (8:00-9:30 a.m. MT)
- Attend in-person breakout sessions that will not be streamed via Zoom including the popular Story Circles session (limited capacity)
- Join our reception (5:30-7:00 p.m. MT)

Click here to register

Travel/Hotel Information

The AFTD Education Conference is a hybrid event, with Friday's events taking place simultaneously online via Zoom and in person at the Omni Interlocken Hotel. Thursday events are in person only.

Hotel reservations can be made now by clicking here or calling 1-800-THE-OMNI (800-843-6664). If you need an ADA-compliant room, please email conference@theaftd.org for assistance.

Families who are interested in attending the Education Conference in person can apply for an AFTD Comstock Travel Grant, which provides up to $500 in financial assistance to defray the costs of travel and lodging. Apply online, or download this application and mail it to AFTD's office.

Make a donation to help support this free event

Keynote Speaker: Katie Brandt

Katie Brandt is a powerful public speaker, educator and advocate in the healthcare and research space. Drawing from her own experience of caregiving for her husband and father, Katie’s purpose is to bring the voice of lived experience to spaces where it may enhance care, advance research and impact policy for serious health conditions such as frontotemporal degeneration, young-onset dementias and rare diseases.

Katie is the Director of Caregiver Support Services and Public Relations for the Massachusetts General Hospital Frontotemporal Disorders Unit where she provides leadership for caregiver research, dementia care education and community events. Her stewardship of philanthropy has helped to raise $2 million in support of the clinical research efforts of the MGH FTD Unit.

In 2019, Katie became the first non-physician Co-Chair of the National Alzheimer’s Project Act Advisory Council on Alzheimer’s Research, Care and Services, connecting her with the opportunity to impact federal policy initiatives and research priorities that promoted health equity and person-centered care at every stage of life lived alongside dementia.

Katie has shared her family’s story of love, loss and resilience through print, television, academic publications, podcasts and her short film, Love Is Out There, which won runner-up at the 2016 American Academy of Neurology’s Neuro Film Festival. She is the Founder and CEO of Katie Brandt Advocacy, LLC, a consultancy that provides a platform for her lived experience presentations, bridging connections with clinicians, scientists, funders and policy makers. Each aspect of Katie’s work aims raise awareness, funds and hope that the cure of tomorrow is not so far from the care of today.

Learn more at www.KatieBrandt.org.

Featured Speakers

Halima Amjad, MD, PhD, MPH, Associate Professor of Medicine in the Division of Geriatric Medicine at Johns Hopkins University

Eric R Anderson, MD, PhD, MBA, FAAN, Chief Medical Officer at Synapticure

Ece Bayram, MD, PhD, Assistant Professor in Movement Disorders Center at the University of Colorado Anschutz, Department of Neurology

Michael Benatar, MBChB, MS, DPhil, professor of neurology, the Walter Bradley Chair in ALS Research; Executive Director of the ALS Center, Chief of Neuromuscular Division, and Vice Chair for Clinical & Translational Research in the Department of Neurology at the University of Miami

Samantha Holden, MD, MS, FAAN, Associate Professor of Neurology at the University of Colorado School of Medicine, Vice Chair of Outpatient Neurology Services and the director of the Lewy Body Dementia Association Research Center of Excellence at the University of Colorado

Hillary Lum, MD, PhD, Associate Professor of Medicine at the University of Colorado School of Medicine

Deb Jobe, AFTD Persons with FTD Advisory Council

Corey McMillan, PhD, Associate Professor of Neurology at the University of Pennsylvania, Co-Director of the Penn Frontotemporal Degeneration Center

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Mary O’Hara, MA, LCSW, Senior Instructor, Psychiatry-Outpatient, University of Colorado

Kevin Rhodes, AFTD Persons with FTD Advisory Council

Amy Shives, MEd, AFTD Persons with FTD Advisory Council

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Seth Stern, MD, AFTD Persons with FTD Advisory Council

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Adreanne Tatro, MM MT-BC, Research Services Principal Professional for the Division of Geriatric Medicine at the University of Colorado School of Medicine

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Emma Heming Willis, Co-founder and Chief Impact Officer for Make Time Wellness, FTD Advocate

All Speakers

Aisha Adkins, Storyteller

Judy Bearer, AFTD Ambassador

Meghan Buzby, MBA, AFTD

Spencer Cline, AFTD Ambassador

Brook Croke, Synapicture

Susan L-J Dickinson, MSGC, AFTD

Camille Dunn, AFTD Volunteer

Carrie Edwards, AFTD Ambassador

Anne Fargusson, RN, AFTD's Persons with FTD Advisory Council

Melissa Fisher, AFTD Ambassador

Leah Forsberg, PhD, Mayo Clinic

Diana Gonzalez-Morett, AFTD Ambassador

Sandra Gonzalez-Morett, AFTD Ambassador

Tanisha Gupta, AFTD Volunteer

Sandy Howe, AFTD's Persons with FTD Advisory Council

Linde Jacobs, Cure MAPT

Kim Jenny, MS, LCGC, AFTD

Deb Jobe, AFTD's Persons with FTD Advisory Council

Esther Kane, MSN, RN-CDP, AFTD

Dawn Kirby, AFTD Ambassador

Allison Lindauer, PhD, NP, OHSU

Joanna Linerud, AFTD Ambassador

Liz Matthews, AFTD Support Group Volunteer

Stella McCaughey, PhD, Alector

Robert Meddaugh, AFTD's Persons with FTD Advisory Council

Carrie Milliard, MS, CGC, CCRC, FTD Disorders Registry

Julia Mitchell, AFTD Support Group Volunteer

Stephanie Muskat, MSW, RSW, Compassion in Caregiving

Scott Oxarart, AFTD Ambassador

Kevin Rhodes, AFTD's Persons with FTD Advisory Council

Emily Rogalski, PhD, University of Chicago

Elaine Rose, AFTD Ambassador

Matt Sharp, MSS, AFTD

Deb Scharper, AFTD Ambassador

Amy Shives, MEd, AFTD's Persons with FTD Advisory Council

Natasha Smith (Jasso), AFTD Volunteer living with FTD

Wanda Smith, California Senior Legislature

Seth L. Stern, MD, AFTD's Persons with FTD Advisory Council

Chris Tann, AFTD's Persons with FTD Advisory Council

Click here to register

Agenda

The times listed below are Mountain Time (MT).

Thursday, May 1 (in-person)

Genetic Symposium Agenda

NOTE: To protect the privacy of attendees, AFTD’s Genetic FTD Symposium will not be livestreamed. The symposium will be recorded and made available to view following the AFTD Education Conference, with any potentially sensitive material removed.

1:00 PM
Genetic FTD Overview and Resources
Susan Dickinson, MSGC (AFTD); Kim Jenny, MS, LCGC (AFTD)

When FTD runs in the family, multiple relatives across several generations may be affected, bringing a profound emotional burden amid the uncertainty of it all. Who else will develop FTD? When will symptoms develop? Do I want to know what the future holds for me? In this session, AFTD Manager of Genetic Initiatives Kim Jenny will review the basics of FTD genetics and explain why people with genetic FTD play such a crucial role in research. Kim will review the importance of genetic counseling and discuss additional resources developed specifically for those impacted by genetic FTD.

1:30 PM
Busting Myths about Genetic FTD
Brook Croke, MS, LCGC (Synapicture); Kim Jenny, MS, LCGC (AFTD); Carrie Milliard, MS, CGC, CCRC (FTD Disorders Registry, moderator)

Genetics is increasingly integral to medical care, but some common myths persist, even among healthcare providers. In this session, AFTD’s Kim Jenny will be joined by genetic counselor Brook Croke to address common misconceptions surrounding the genetics of FTD. They will discuss the potential benefits and limitations of learning your genetic results and share new lessons learned about genetic FTD. Attendees are encouraged to ask questions but should not reveal personal or family information.

2:15 PM
The Genetic FTD Clinical Trial Landscape
Amanda Gleixner, PhD (AFTD)

With the clinical trial landscape for FTD evolving so rapidly, some may wonder why no FTD treatments have yet been approved. This session, which will cover the drug-development process for FTD and related disorders, will explain why that is the case. Attendees will learn how clinical trials focusing on genetic FTD will impact the FTD community as a whole, with biopharmaceutical companies providing updates on genetic FTD treatments currently in the works.

3:00 PM
Break

3:30 PM
Genetic FTD Research Townhall
Penny Dacks, PhD (AFTD)

Multiple clinical trials are currently testing experimental FTD treatments that might slow or delay the onset of FTD. This townhall discussion, moderated by AFTD Senior Director of Scientific Initiatives Penny Dacks, PhD, gives attendees the rare opportunity to engage with the experts at the forefront of these trials. Share your experiences with researchers and ask questions about study design, requirements for participation, and the latest developments, including recent successes.

4:20 PM
How to Become a Genetic FTD Advocate
Meghan Buzby, MBA (AFTD); Linde Jacobs, BSN (Cure MAPT); Joanne Linerud (AFTD Ambassador); Wanda Smith (California Senior Legislature)

Many members of the AFTD community have turned to advocacy to bring purpose to their FTD journeys. In this session, some of those advocates will share their experiences, unique perspectives, and accomplishments in bringing greater awareness to genetic FTD, whether within their own families, hometown, states – and even on the federal level. Attendees will gain valuable insights into effective advocacy approaches and discover new tools for making an impact.

Friday, May 2 (in-person and virtual)

Time (MT)	Session
8:00 AM	Breakfast Connections & Registration
9:30 AM	Welcome and FTD 101 - Esther Kane, MSN, RN-CDP (AFTD) and Shana Dodge, Ph.D. (AFTD) AFTD Support & Education Director and Education Conference MC Esther Kane will kick off the Education Conference and present a brief overview of FTD signs, symptoms, and subtypes. AFTD Director of Research Engagement Shana Dodge will then join her to share an overview of FTD research.
10:00 AM	Keynote Speaker: Katie Brandt, MM Dementia has indelibly marked Katie Brandt’s life. Her late husband was diagnosed with FTD when he was just 29; weeks later, her father was diagnosed with Alzheimer’s. In her Keynote Address, she will talk about her emotional journey as a dementia caregiver – from grief to acceptance to showing up for others with kindness and compassion – and share how she has channeled her lived experience into helping others through her advocacy and support work.
10:30 AM	Living Well with an FTD Diagnosis - Deb Jobe (AFTD's Persons with FTD Advisory Council); Kevin Rhodes (AFTD's Persons with FTD Advisory Council); Amy Shives, MEd (AFTD's Persons with FTD Advisory Council); Seth Stern, MD (AFTD's Persons with FTD Advisory Council); Mary O’Hara, MA, LCSW (University of Colorado, moderator) People who have FTD can experience life more fully when they have access to appropriate, personalized support strategies. Members of AFTD’s Persons with FTD Advisory Council will talk about how they compensate for the limitations that FTD imposes, and the adaptations they use to accommodate their changing needs and symptoms. They will also share ways that care partners can work alongside persons with FTD to help them experience their best lives.
11:00 AM	Break
11:30 AM	Breakouts (click for details)
12:15 PM	Lunch
1:15 PM	FTD’s Cognitive and Motor Symptoms: When Movement, Language, and Behavior Meet – Ece Bayram, MD, PhD (University of Colorado Anschutz); Samantha Holden, MD (University of Colorado School of Medicine) FTD is not one discrete condition, or even one disease pathology. Signs and symptoms of the FTD subtypes frequently overlap, leading to confusion for care partners and persons diagnosed as new ones arise. During this session, leading FTD researchers from the University of Colorado will explore how movement, language, and cognitive symptoms intersect in FTD and beyond, and what that means for clinical research into these diseases.
2:00 PM	GUIDE: A Federal Initiative in Comprehensive Care - Halima Amjad, MD, MPH, PhD (John Hopkins University); Eric Anderson, MD, PhD, MBA (Synapticure); Hillary Lum, MD, PhD (University of Colorado School of Medicine); Adreanne Tatro, MM MT-BC; Sharon S. Denny, MA (AFTD, moderator) Launched in 2024 by the federal Centers for Medicare & Medicaid Services, the Guiding an Improved Dementia Experience (GUIDE) Model focuses on comprehensive, coordinated dementia care and aims to improve quality of life for people with dementia, reduce strain on their unpaid caregivers, and enable people with dementia to remain in their homes and communities. This session will examine GUIDE in depth. Presenters will describe how FTD families can use GUIDE to access supportive care, as well as how to share their feedback and experiences to inform FTD advocacy.
2:30 PM	FTD: At the Crossroads of Neurodegenerative Disease - Michael Benatar, MD, PhD (University of Miami); Penny Dacks, PhD (AFTD); Corey McMillan, PhD (University of Pennsylvania) As our understanding of FTD grows, we are learning that it shares clinical symptoms and underlying causes with other neurodegenerative diseases. FTD and ALS exemplify this – the diseases have common genetic causes as well as similar pathology in sporadic cases. Historically, clinical research into FTD and ALS has been siloed, but in the last few years, AFTD and a dedicated group of experts have worked to bridge the existing research and clinical-care gaps. This session will explain why that collaboration is so important, give updates on what has emerged thus far, and explain how these partnerships impact everyone facing FTD.
3:15 PM	Break
3:45 PM	Breakouts (click for details)
4:30 PM	Break
4:45 PM	An Update from AFTD’s CEO – Susan L-J Dickinson, MSGC (AFTD) AFTD works every day to leverage opportunities in the constantly evolving landscape of FTD care and research. AFTD CEO Susan L-J Dickinson will present AFTD’s priorities for the coming years and outline the strategies that AFTD will employ to advance accurate and speedy diagnosis, better support families affected by FTD, and drive research that will lead to approved treatments.
5:00 PM	Updated session: Join AFTD’s Movement for Change! – Emma Heming Willis and Meghan Buzby, MBA (AFTD) Emma Heming Willis joins AFTD's Director of Advocacy and Volunteer Engagement to discuss how volunteering can amplify our impact and how your voice can drive the change needed for a brighter future for those affected by FTD. Now is the perfect time to get involved and help build the FTD movement with AFTD. By joining forces with AFTD, you can make a real difference in advocating for positive change in the FTD community and pave the path forward to a better world.

Breakout Sessions

MORNING BREAKOUTS

In-Person

What Is Genetic FTD? - Kim Jenny, MS, LCGC (AFTD); Jackie Shapiro (AFTD Ambassador)

As many as one in five people with FTD have an inherited genetic cause. AFTD Manager of Genetic Initiatives Kim Jenny will talk about the genetics of FTD, including why many FTD researchers focus on inherited causes of FTD in their work. She will also discuss the importance of genetic counseling and review available resources to support people who are at genetic risk.

Navigating Our Own Path as Persons Diagnosed - Anne Fargusson, RN (AFTD's Persons with FTD Advisory Council); Sandy Howe (AFTD's Persons with FTD Advisory Council); Robert Meddaugh (AFTD's Persons with FTD Advisory Council); Chris Tann (AFTD's Persons with FTD Advisory Council); Matt Sharp, MSS (AFTD, moderator)

Discussions about FTD too often lack the opinions and perspectives of those diagnosed. AFTD’s Persons with FTD Advisory Council ensures that these essential voices remain front and center. In this session, Council members will discuss the tools and tips they use to enhance their quality of life, as well as how they work with their care partners and other loved ones to tend to their all-important self-care. Session attendees will be encouraged to share their own experiences and insights. Care partners are welcome to attend for support but will be asked to defer participation to those who are diagnosed.

Lessons Learned as an FTD Caregiver - Katie Brandt, MM (Massachusetts General Hospital Frontotemporal Disorders Unit); Sandra Gonzalez-Morett (AFTD Ambassador); Dawn Kirby (AFTD Ambassador); Scott Oxarart (AFTD Ambassador); Deb Scharper (AFTD Ambassador)

While there is no way to adequately prepare for FTD caregiving, care partners know the tremendous value of sharing wisdom learned on the journey. In this session, five such caregivers will provide insights, tips, and tricks that helped them along the way – including why it’s so important to ask for help when you need it and to acknowledge the grief inherent in an FTD diagnosis

In-Person and Virtual

The Power of Natural History Studies: ALLFTD and Beyond - Leah Forsberg, PhD (Mayo Clinic)

With nearly 30 sites in the U.S. and Canada, ALLFTD is one of world’s largest ongoing natural history studies of FTD. But what are natural history studies? How can they contribute to our understanding of FTD, or intersect with clinical trials of potential FTD treatments? Dr. Leah Forsberg of the Mayo Clinic will explain how ALLFTD and other natural history studies work and share some of their key findings so far. International FTD scientists will also share ways to get involved in FTD research across the globe.

Virtual

Growing Up with FTD: Young Caregivers on the FTD Journey - Spencer Cline (AFTD Ambassador); Camille Dunn (AFTD Volunteer); Tanisha Gupta (AFTD Volunteer); Liz Matthews (AFTD Volunteer, facilitator); Julia Mitchell (AFTD Volunteer, facilitator)

Teenagers and young adults who find themselves thrust into the role of FTD caregiver grapple with a range of challenging emotions: confusion, stress, fear, inadequacy, even guilt. In this facilitated discussion, a panel of former youth caregivers will talk about the resources that helped them, the insights they’ve gleaned, and the ways they’ve taken care of themselves during this crucial stage of their lives.

Understanding and Approaching Behavioral Symptoms in FTD - Allison Lindauer, PhD, NP (OHSU)

Some of FTD’s most common – and challenging – symptoms are behavioral in nature, including apathy, disinhibition, and compulsive or ritualistic behaviors. Dr. Allison Lindauer, a nationally certified gerontological nurse practitioner and scientist from Oregon Health & Science University and the Layton Aging and Alzheimer’s Disease Center, will discuss behavioral symptoms in FTD, their impact on the person with FTD and their families, and when and how care partners should address them. She will also outline resources that caregivers can use to get help and support.

AFTERNOON BREAKOUTS

In-Person

Advocating for Your Loved One in Facility Care Settings - Judy Bearer (AFTD Ambassador); Melissa Fisher (AFTD Ambassador); Elaine Rose (AFTD Ambassador)

While FTD education is growing, many healthcare providers are still unfamiliar with how to meet the needs of those with a young-onset dementia that causes unusual cognitive, behavioral, and language symptoms. If you have a loved one with FTD, expect to advocate on their behalf to get the comprehensive care they need. This session features three AFTD Ambassadors, all current or former care partners, who will discuss the misconceptions about FTD they have encountered in long-term care settings, and the strategies, tools, and resources they used to obtain effective person-centered care for their loved ones.

Telling Your Story to Make a Difference - Carrie Edwards (AFTD Ambassador); Natasha Jasso Smith (AFTD Volunteer living with FTD)

Last year, AFTD volunteers Carrie Edwards and Natasha Jasso Smith told their FTD stories to staffers at the office of Virginia’s governor, beginning a lengthy and ultimately successful drive to formally recognize FTD Awareness Week 2024 in their home state. Here, they will share what they learned from that process and explain how others facing FTD can effect change on the state and local level by raising their voices – whether in person or via social or earned media – and talking about their experiences with the disease.

Finding Hope, Strength, and Resilience on the FTD Journey - Mary O’Hara, MA, LCSW (University of Colorado)

The journey with FTD is filled with a range of complex and changing emotions, including grief and loss. Designed for care partners and caregivers, this session, led by Mary O’Hara of the University of Colorado, will explore the distinct experiences of grief in FTD while focusing on identifying your own ways to tend to these emotions. She will also explore ways to call forth your personal reserves of strength and resilience to help navigate a disease as isolating as FTD.

In-Person and Virtual

Improving Quality of Life with PPA: The Communication Bridge Study - Emily Rogalski, PhD

Primary progressive aphasia (PPA) is characterized by a gradual loss of one’s ability to produce and comprehend language, but emerging strategies that support communication in PPA can sustain quality of life for both the person diagnosed and their family. The University of Chicago’s Communication Bridge Research Program has been studying evidence-based strategies to better allow people with PPA to express themselves and understand others. Dr. Emily Rogalski will break down what her team has learned from the Communication Bridge program and explain how families facing PPA can participate.

Virtual

Finding Balance: Practical Tools to Protect Your Mental Health - Stephanie Muskat, MSW, RSW (Compassion in Caregiving)

Whether you are living with a diagnosis or caring for someone who is, FTD has a significant impact on your emotional and mental health. This session – led by Stephanie Muskat, the founder of Compassion in Caregiving, which provides caregivers with therapy and coaching – offers crucial practical resources to help preserve your mental health amid the FTD journey. She will highlight the importance of setting boundaries, share self-care strategies, and explain what the most current research on caregiver mental and emotional health reveals.

Power in Numbers: How the FTD Disorders Registry Drives Groundbreaking Research - Leah Forsberg, PhD (Mayo Clinic); Stella McCaughey, PhD (Alector); Scott Oxarart (AFTD Ambassador); Carrie Milliard, MS, CGC, CCRC (FTD Disorders Registry, moderator)

The FTD Disorders Registry has had a transformative impact on FTD research, care, and advocacy since launching eight years ago. In this session, key Registry stakeholders – a participant, a researcher, and a representative from the pharmaceutical industry – will join Registry Director Carrie Milliard to share their own perspectives on how the Registry helps the FTD community and drives forward research to effective FTD treatments. Learn how you can get involved, and why your participation is so critical to future FTD research.

Click here to register

2025 AFTD Education Conference Sponsors

AFTD would like to thank our sponsors for their generous support and ensuring this event remains free for all to attend!

Presenting Sponsor

Registration Sponsor

Gold

Bronze

FTD in the Arts

Exhibitors

If you're interested in learning how you can sponsor this year's conference, please consider our Sponsor Opportunities & Benefits package, or if you'd like to learn about being an exhibitor, please contact AFTD Corporate and Foundation Relations Manager Liz Graham at egraham@theaftd.org or 484-584-0012.

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Speakers | Agenda | Sponsors

Register Today for AFTD's 2025 Education Conference

Omni Interlocken Hotel | Denver, CO

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Travel/Hotel Information

Keynote Speaker: Katie Brandt

Featured Speakers

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Agenda

Thursday, May 1 (in-person)

Friday, May 2 (in-person and virtual)

Breakout Sessions

MORNING BREAKOUTS

AFTERNOON BREAKOUTS

2025 AFTD Education Conference Sponsors

Presenting Sponsor

Registration Sponsor

Gold

Bronze

FTD in the Arts

Exhibitors

Have Questions?