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The AFTD 2022 Education Conference offers the invaluable opportunity to connect, learn, and engage.

Whether you join us online via a free livestream, or you attend in person, you will experience a day rich with the latest FTD information and practical strategies for handling the FTD journey, delivered by those who truly understand this disease. We hope you will join us!

Highlights of this year’s conference include:

  • Presentations focusing on the latest strides in FTD research, the diverse FTD care partner experience, and the language of dementia, presented by experts in the FTD/dementia field
  • Interactive breakout sessions that take an in-depth look at key aspects of the FTD journey
  • Vital perspectives from people living with FTD, shared by AFTD’s Persons with FTD Advisory Council
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Keynote Speaker: Rita Choula, MA

Rita Choula is the Director of Caregiving with the AARP Public Policy Institute, where she manages and provides content expertise on family caregiving initiatives, specifically focused on identifying and supporting the needs of multicultural family caregivers. Rita’s mother was diagnosed with behavioral variant FTD (bvFTD) and passed away in October 2020. Rita understands the balancing act that people with loved ones affected by FTD must take on, having served as her mother’s caregiver for several years, while working full time and parenting two young children. She joined AFTD’s Board in 2021.

Featured Speakers

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Chiadi Onyike, MD, MHS, Associate Professor of Psychiatry and Behavioral Sciences at Johns Hopkins University, Director of the Johns Hopkins Young-Onset Dementias Program

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David Irwin, MD, Principal Investigator of the Penn Digital Neuropathology Lab, attending cognitive neurologist in the University of Pennsylvania’s Frontotemporal Degeneration Center

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Tania Gendron, PhD, Mayo Clinic in Florida, Translational Neurobiology of Amyotrophic Lateral Sclerosis and Frontotemporal Dementia Laboratory

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Angela Taylor, Senior Director of Research and Advocacy, Lewy Body Dementia Association, co-chair of the Dementia Nomenclature Initiative Steering Committee

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Laynie Dratch, ScM, CGC, Genetic Counselor, University of Pennsylvania’s Frontotemporal Degeneration Center

Logistics

The AFTD 2022 Education Conference is a hybrid event, taking place in person at the BWI Airport Marriott outside Baltimore, Maryland, as well as being livestreamed. The event will run from 9:00 a.m. to 5:00 p.m. EDT.

If you are attending in person:

  • AFTD offers modest financial assistance, in the form of Comstock Travel Grants, for people with FTD and care partners interested in attending the conference in person. These grants can be used to defray the cost of travel, lodging, and conference fees. We are now accepting applications.
  • Please note that proof of COVID-19 vaccination and masks will be required for all in-person attendees. The CDC currently recommends both a full course of COVID-19 vaccination and a booster. Attendees will be required to sign a COVID waiver and complete a brief symptom screening the day of the event.
  • In-person slots are limited — be sure to register today!

If you are attending virtually:

If you have questions about registration or the conference, please email conference@theaftd.org or call 866-507-7222

If you are interested in sponsoring the conference, click here to download more information.

AGENDA

Apart from specific breakout sessions, all sessions listed below are available for both in-person and virtual attendees.

Time Session
9:00 AM Welcome
Teresa Webb, RN
Sharon S. Denny, MA
9:15 AM Overview: FTD and AFTD
Susan L-J Dickinson, MSGC
9:30 AM Guess Who’s Here? We’re Still Here!: AFTD’s Persons with FTD Advisory Council
Anne Fargusson, RN
Jennifer Lee, MEd
Bob Meddaugh
Cindy Odell
Steve Perlis
Amy Shives, MEd
Teresa Webb, RN
Moderator: Matthew Sharp, MSS AFTD’s Persons with FTD Advisory Council works to ensure that the experiences and opinions of people living with this disease are reflected in AFTD’s mission. In this session, members of this important group will share their personal perspectives on life with FTD.
10:00 AM What’s in a Name? The Dementia Nomenclature Initiative
Angela Taylor
Moderator: Matthew Sharp, MSS Words matter. And for people living with FTD, Alzheimer’s, and other forms of neurodegenerative disease, the words we use when talking about dementia can be confusing, problematic, or even stigmatizing. This session focuses on the Dementia Nomenclature Initiative, established in 2019 to promote greater understanding of dementia by updating the language we use to describe it.
10:20 AM The Diverse FTD Care Partner Experience
Aisha Adkins, MPA, CNP
Rachel Castellanos
Bob Powers
Abrar Tanveer
Moderator: Halima Amjad, MD, MPH Your FTD experience is as distinctive as you are, reflecting your ethnic background, geographic location, socioeconomic status, and your specific relationship with this disease. This panel discussion will focus on what makes each person’s FTD journey unique, while highlighting shared elements that transcend such differences.
11:00 AM BREAK
11:15 AM Morning Breakouts (Click for details)
12:00 PM LUNCH
1:00 PM Special video presentation featuring Parker McKay

Last year, Parker McKay appeared on the NBC singing competition The Voice, where she shared her mother’s FTD story with a national television audience. Parker talks about her late mom, her FTD journey, and their shared love of music.

1:05 PM Navigating the Uncertainty of Familial FTD
Laynie Dratch, ScM, CGC
Moderator: Esther Kane, MSN, RN-CDP Upon diagnosis, families may wonder whether FTD could run in the family. And in approximately 40% of cases, it does. The emotional journey of knowing or not knowing one’s potential risk can be a rollercoaster ride. This session addresses the specific challenges caused by the potential risk of inheriting FTD by examining the range of feelings that accompany a diagnosis. It will also consider the factors that affect one’s decision-making regarding genetic testing.
1:45 PM Biomarkers: The Next Frontier of FTD Research
David Irwin, MD
Tania Gendron, PhD
Moderator: Debra Niehoff, PhD Identifying FTD biomarkers is among the most important goals for researchers studying FTD. Establishing biomarkers would allow for more accurate and early diagnosis, better monitoring of FTD progression, and a way to examine treatment effectiveness. This session will explain what biomarkers are, explore the current state of FTD biomarker research, and inform you what is on the horizon – and how you can play a role in FTD biomarker development.
2:30 PM BREAK
2:45 PM Afternoon Breakouts (Click for details)
3:30 PM BREAK
3:45 PM FTD Treatment Development: How Can You Help?
Chiadi Onyike, MD, MHS
Penny Dacks, PhD Dr. Onyike and Dr. Dacks will talk about the development of new treatments for FTD, including a look at therapies currently under investigation for genetic and sporadic FTD and the ways in which research volunteers are needed to drive the science forward.
4:15 PM Keynote Address: A Call for Bold Empowerment
Rita Choula, MA Rita Choula – a former FTD caregiver for her mother, professional caregiver advocate with the AARP Public Policy Institute, and AFTD Board member – will speak about her family’s FTD journey, along with a call to bold empowerment of individuals and action by the community.
4:45 PM AFTD’s 20th Anniversary: Where We Started, Where We Are, and Where We’re Going
Helen-Ann Comstock, AFTD Founder
Susan L-J Dickinson, MSGC, AFTD CEO
David Pfeifer, AFTD Board Chair
5:30 PM RECEPTION

BREAKOUT SESSIONS

MORNING BREAKOUTS

IN-PERSON

Meaningful Connection and Adapted Communication with PPA
Cindy Nichols, MS, CCC-SLP
Theresa Alexander, MS, CCC-SLP
Moderator: William Reiter, MA

Primary progressive aphasia profoundly affects one’s ability to speak and understand language – and, as a result, to meaningfully connect with others. This engaging and interactive session will focus on practical approaches to overcoming communication challenges and barriers in PPA. Participants will be able to practice techniques in couples or small groups, all in a safe and supportive environment.

Caring from the Other Side of the Fence
Roundtable of persons diagnosed with FTD
Moderator: Matthew Sharp, MSS

Persons with FTD will discuss the experience of providing care for their own loved ones while themselves living with an FTD diagnosis. This session will also offer persons diagnosed an opportunity to socialize and network with their peers.

 

IN-PERSON AND VIRTUAL

What I’ve Learned by Supporting Others: A Care Partner Panel Discussion
Marian Grems
Scott Rose
Moderator: Bridget Moran-McCabe, MPH

Join some of AFTD’s long-time support group volunteers as they talk about their experiences as caregivers and care partners, provide insight into AFTD’s network of support, and share resources that can help you on your FTD journey.

 

VIRTUAL

Distinguishing bvFTD from Psychiatric Disorders
Content targeted to healthcare professionals. Families welcome.
Ted Huey, MD
Moderator: Sharon S. Denny, MA

Approximately 50% of people with behavioral FTD first receive a diagnosis of depression, bipolar disorder, anxiety, or another psychiatric diagnosis, delaying identification of FTD for an average of three and a half years. This session will describe the key symptoms that mimic psychiatric disorders and the importance of pursuing a differential diagnosis. Current diagnostic methods, resources, and advances in the research pipeline will be discussed.

Finding Support through Neuropalliative Care
Farrah Daly, MD
Moderator: Esther Kane, MSN, RN-CDP

Neuropalliative care is an emerging subspeciality that shows promise in supporting those diagnosed with FTD and their families. This session will help you better understand how this type of care can help you, the variability that exists in current services, and how to be your best advocate in seeking palliative care.

AFTERNOON BREAKOUTS

IN-PERSON

Open Discussion for FTD Care Partners
Moderator: Sharon S. Denny, MA

This facilitated forum will provide care partners and caregivers an opportunity to ask questions, share lessons learned, and network with AFTD’s Ambassadors and each other around shared experiences.

Building FTD-Friendly Communities
Darya Rahbar, MS
Moderator: Matt Sharp, MSS

This session will provide an overview of the Dementia Friendly America movement and how it works with local governments, private businesses, and local organizations to develop communities that are informed, safe, and respectful, and provide supportive options that foster quality of life for people living with dementia and their families.

 

IN-PERSON AND VIRTUAL

Participating in FTD Research, Advancing FTD Science
Brian Appleby, MD
Anne and Ed Fargusson
Dianna Wheaton, PhD, MS, CHES
Moderator: Shana Dodge, PhD

The more we learn about FTD, the closer we come to having effective treatments and a cure. In this session, representatives from the FTD Disorders Registry and the ALLFTD network will discuss how information they glean from FTD research contributes to the science of FTD. Additionally, people who have taken part in FTD research will talk about their experiences.

 

VIRTUAL

What Do Families Need Most After an FTD Diagnosis?
Content targeted to healthcare professionals. Families welcome.
Katie Brandt, MM
Rose Gallagher, RN
Jennifer and Chris Lee
Moderator: William Reiter, MA

After an FTD diagnosis, families face new and bewildering questions: How will the disease progress? How do we begin finding help? Their uncertainty may increase stress and feelings of hopelessness. This session will educate healthcare professionals in how best to provide support immediately after a diagnosis, guide families to the necessary emotional supports, and share resources to help them move forward. 

Coping with Role Changes in FTD
Darby Morhardt, PhD, LCSW
Moderator: Esther Kane, MSN, RN-CDP

FTD alters personal dynamics – spouses become primary caregivers, while adult children may provide care from afar. Understanding and adapting to these new roles can be disconcerting and extremely challenging. This session will help caregivers and care partners recognize the discrete stressors that come with role changes in FTD, and provide tools to help cope with them.

2022 AFTD EDUCATION CONFERENCE SPONSORS

AFTD thanks the following sponsors for their generous support of the 2022 AFTD Education Conference:

PLATINUM SPONSORS

GOLD SPONSORS

SILVER SPONSORS

BRONZE SPONSORS

Interested in sponsoring the 2022 AFTD Education Conference? Click here to download more information.

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