Persons with FTD Advisory Council
The AFTD Persons with FTD Advisory Council was formally chartered in 2020. Its members will help to ensure that the insights and voices of people living with FTD are considered in the development of AFTD’s policies, programs, and services. The Persons with FTD Advisory Council is an evolution of the informal “Think Tank” of persons diagnosed that had been informing AFTD’s work since 2015.
Sandy Howe, Co-Chair
Washington
Sandy Howe lives in Edmonds, Wash., with Dirk, her husband of 40 years. Together, they have three married sons and three granddaughters. Sandy worked as a civil engineer and a full-time mother. Ten years ago, she began forgetting words, missing deadlines, speaking out uncharacteristically, and losing her ability to do what she had previously done well. She was diagnosed with FTD in 2014. She stopped working and, eventually, gave up driving. Sandy is thankful for her early diagnosis and that she found vocational, speech, and occupational therapists who taught her how to cope with FTD and compensate for the changes it brings to her life. In 2022, Sandy joined the AFTD Persons with FTD Advisory Council. Her priority is letting newly diagnosed people—and their caregivers—know that they’re not alone.
Kevin Rhodes, Co-Chair
New Hampshire
Kevin lives in Manchester, N.H., with his wife Debra. Kevin is an active AFTD volunteer and joined AFTD’s Persons with FTD Advisory Council in August of 2022. Before retiring due to his FTD diagnosis in 2021, Kevin was employed in the healthcare technology industry for more than 30 years. The last 15 years, he was as an account executive working nationally with health plans, health systems, provider organizations, provider groups, and accountable care organizations. Kevin has a degree in information technology and has worked for both very large and small startup healthcare technology organizations. He has extensive experience with healthcare technology communications and care management, as well as patient outreach strategies. Due to his FTD diagnosis, Kevin would very much like to work with healthcare organizations to bring about knowledge and assistance to people with FTD.
Anne Fargusson, RN
California
Anne Fargusson spent her career as a registered nurse and holds a Bachelor of Science in nursing. She earned an enterostomal therapist certification in wound and ostomy care and a certification to place PIC lines. About 20 years ago Anne was diagnosed with behavioral variant FTD, and she subsequently became part of a gene study, where it was determined that she has the C9orf72 genetic variant. Twenty-eight years ago, Anne's father died of complications related to FTD. Since then, she has taken part in research studies at the UCSF Memory and Aging Center. She is active in FTD advocacy and in raising awareness. Anne and her husband, Ed, have identical twin sons, both of whom are emergency department physicians.
Deborah Jobe
Missouri
Deborah (Deb) Jobe has been happily married for over 19 years to her husband, Jon. She has two adult daughters, one grandchild, and two four-legged kids (her Carolina dogs, Tilly and Buliwyf). Deb was diagnosed with semantic PPA and CBS at age 53. At that time, she worked in the human capital management global space with Fortune 500 companies, overseeing the customer experience. As a dementia advocate and AFTD volunteer, Deb focuses on public policy, early detection, education, and public awareness. Deb has met with legislators on both the state and national level, served as a Lived Experience panelist for the NIA/NIH, has been a patient advocate and grant community member for the Geriatric Emergency care Applied Research (GEAR) network, and has been featured in various videos and print publications. Deb served on the Alzheimer’s Association National Early-Stage Advisory Group (ESAG) before joining the AFTD Persons with FTD Advisory Council. In her spare time, she colors and paints, a newly discovered passion since her diagnosis.
Robert Meddaugh
Iowa
Bob Meddaugh grew up in Connecticut and attended Iowa State University. He received a BS in fish and wildlife biology and in journalism in 1972. While there he met and married Kathryn Stangl, in 1971. They have two daughters: Kelly, who lives in Pennsylvania, and Colyn, who lives in Kansas City. Before FTD, Bob worked as a fisheries biologist, an agricultural journalist, a public relations and communications consultant, and a database designer. Bob stopped working in 2001 when he kept forgetting what he was working on. Unfortunately, it took until 2006 for Bob to get diagnosed with dementia, which was later refined to behavioral variant FTD in 2007. He has been active with AFTD and is past co-chair of the AFTD Persons with FTD Advisory Council. He is also the chair of the City of Des Moines Handicapped Access Advisory Board. He lives alone with his two dogs — Kathy died February 21, 2021.
Amy Shives, MEd
Washington
Amy Shives earned her master’s degree in education from Western Washington University in Bellingham, Wash. Her career included employment as a child therapist in social service agencies prior to her position at Community Colleges of Spokane. There, she was a tenured counseling faculty member for 25 years prior to a diagnosis of FTD. Amy is a volunteer at the UCSF Memory and Aging Center where she is enrolled in longitudinal research studies for FTD. She is a founding board member of Dementia Alliance International (DAI) and has been a member of the AFTD Education Conference Planning Committee since 2019. She is also a past member of the National Alzheimer’s Association Early-Stage Advisory Group, where she has spoken nationally on dementia issues. Amy grew up with a mother who had unrecognized FTD challenges. She and her husband, George, have been married for 41 years and have two adult daughters. Their son Frankie, a Cavalier King Charles Spaniel, and his new brother Tommy the kitten remains in the home.
Seth Stern, MD
Georgia
Seth L. Stern, MD is a recently retired OB/GYN who concluded his practice after 37 years of dedicated service to his patients—some spanning generations of families. During his career, he had the privilege of providing medical care to both non-pregnant women as well as pregnant women with conditions ranging in complexity from low to high risk. In April 2022, after five years of diligently pursuing a diagnosis, Dr. Stern was diagnosed with primary progressive aphasia. In addition to serving on the Persons with FTD Advisory Council, Dr. Stern is an active member of the Physicians Living with Dementia group (part of the National Council of Dementia Minds). His work regarding FTD and other dementias has included public speaking, participating in webinars, being a guest speaker at the NIH, and having his journey featured both in the Wall Street Journal and on Atlanta News First. Dr. Stern’s awareness and advocacy work for FTD and other neurocognitive disorders focuses on raising public awareness, supporting research, and encouraging empathy and respect for all individuals with neurocognitive disorders.
Chris Tann
Georgia
Chris Tyrone Tann was born in Dayton, Ohio into a family of three older brothers and eventually one younger brother. After high school, Chris decided to serve his country and he selected the United States Navy, retiring honorably after 20 years of service as a torpedoman. Post-naval life, Chris earned his associate degree and eventually began working in quality assurance at Moody Air Force Base in Georgia. In his spare time, he enjoys the company of his wife Debra, his adult children, and grandchildren. Additionally, Chris finds fishing and studying the Bible therapeutic. Chris loves gospel and jazz music; he also enjoys concerts and watching the incredible feats of Cirque Du Soleil. Chris enjoys sharing his FTD journey and welcomes warm conversations with others on the subject, particularly those who are unfamiliar with FTD. Chris was diagnosed with behavioral variant FTD in 2019. He participates with the Black Dementia Minds support group and is in a longitudinal clinical trial at Vanderbilt. Chris considers it a blessing to be able to participate in a clinical trial. He believes his contributions to research will help generations to come. When discussing dementia, there is emphasis placed on “quality of life.” At this point, Chris says he is on a journey, and he seeks to live a life of meaning.
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