Personer med FTD Advisory Council

AFTD Personer med FTD Advisory Council blev formelt chartret i 2020. Dets medlemmer vil bidrage til at sikre, at indsigt og stemmer fra mennesker, der lever med FTD, tages i betragtning i udviklingen af AFTDs politikker, programmer og tjenester. Det Rådgivende Råd for personer med FTD er en udvikling af den uformelle "tænketank" af diagnosticerede personer, som havde informeret AFTD's arbejde siden 2015.

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Sandy Howe, medformand

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. For ti år siden begyndte hun at glemme ord, misse deadlines, udtale sig ukarakteristisk og miste evnen til at gøre det, hun tidligere havde gjort godt. Hun blev diagnosticeret med FTD i 2014. Hun holdt op med at arbejde og opgav til sidst at køre bil. Sandy er taknemmelig for hendes tidlige diagnose, og at hun fandt erhvervs-, tale- og ergoterapeuter, der lærte hende, hvordan hun kan håndtere FTD og kompensere for de ændringer, det medfører i hendes liv. 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. 

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Kevin Rhodes, medformand

New Hampshire

Kevin lives in Manchester, N.H., with his wife Debra.  Kevin is an active AFTD volunteer og sluttede sig til AFTDs personer med FTD Advisory Council i august 2022. Før han gik på pension på grund af sin FTD-diagnose i 2021, var Kevin ansat i sundhedsteknologiindustrien i mere end 30 år. 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 har en uddannelse i informationsteknologi og har arbejdet for både meget store og små nystartede sundhedsteknologiorganisationer. Han har stor erfaring med sundhedsteknologisk kommunikation og plejeledelse samt patientopsøgende strategier. På grund af sin FTD-diagnose vil Kevin meget gerne arbejde sammen med sundhedsorganisationer for at bringe viden og assistance til mennesker med FTD. 

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Anne Fargusson, RN

Californien

Anne Fargusson tilbragte sin karriere som uddannet sygeplejerske og holder a Bachelor of Science in nursing. She earned anenterostomalttterapeut certificering i sår og stomipleje og en certificering til at placere PIC-linjer. Om 20 år siden blev Anne diagnosticeret med adfærdsvariant FTD, og hun efterfølgende blev en del af et genstudie, hvor det var bestemt at hun har C9orf72 genetisk variant. Tyve-otte år 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

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.

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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. Før FTD arbejdede Bob som fiskeribiolog, landbrugsjournalist, PR og kommunikation konsulent, og -en database designer. Bob stoppede med at arbejde i 2001, da han blev ved med at glemme, hvad han arbejdede med. Desværre tog det indtil 2006 for Bob at få diagnosen med demens, som senere blev forfinet til adfærdsmæssige variant FTD i 2007.  Han har været aktiv med AFTD og jegs tidligere medformand for AFTD Personer med FTD Advisory Council. Han er også formand for Byen af Des Moines Advisory Board for handicappede. Han lever alene med sine to hunde - Kathy døde 21. februar 2021.

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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 år og har to voksne døtre. Deres søn Frankie, en Cavalier King Charles Spaniel, og hans nye bror killingen Tommy forbliver i hjemmet.  

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Seth Stern, MD

Georgien

Seth L. Stern, MD is a recently retired OB/GYN who concluded his practice after 37 års dedikeret service til sine patienter - nogle spænder over generationer af familier. I løbet af sin karriere havde han det privilegium at yde lægehjælp til begge ikke-gravide kvinder samt gravide kvinder med lidelser, der rækker ind 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, Persons with FTD Advisory Council member wearing a turquoise-colored suit jacket, teal tie, and silver cross around his neck.

Chris Tann

Georgien

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.