Osoby w Radzie Doradczej FTD

Rada doradcza AFTD Persons with FTD została formalnie powołana w 2020 r. Jej członkowie pomogą zapewnić, że spostrzeżenia i głosy osób żyjących z FTD zostaną uwzględnione w opracowywaniu polityk, programów i usług AFTD. Rada doradcza Persons with FTD jest ewolucją nieformalnego „Think Tank” osób zdiagnozowanych, który informował o pracy AFTD od 2015 r.

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Sandy Howe, współprzewodnicząca

Waszyngton

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. Dziesięć lat temu zaczęła zapominać słów, nie dotrzymywać terminów, mówić w nietypowy sposób i tracić zdolność do robienia tego, co wcześniej robiła dobrze. Zdiagnozowano u niej FTD w 2014 r. Przestała pracować i ostatecznie zrezygnowała z prowadzenia samochodu. Sandy jest wdzięczna za wczesną diagnozę i za to, że znalazła terapeutów zawodowych, logopedów i terapeutów zajęciowych, którzy nauczyli ją, jak radzić sobie z FTD i rekompensować zmiany, jakie choroba ta wprowadza do jej życia. 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, współprzewodniczący

New Hampshire

Kevin lives in Manchester, N.H., with his wife Debra.  Kevin is an active AFTD volunteer i dołączył do AFTD Persons with FTD Advisory Council w sierpniu 2022 r. Zanim w 2021 r. przeszedł na emeryturę z powodu zdiagnozowanej u niego FTD, Kevin przez ponad 30 lat pracował w branży technologii medycznych. 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 ma wykształcenie w zakresie technologii informatycznych i pracował zarówno dla bardzo dużych, jak i małych startupów zajmujących się technologiami opieki zdrowotnej. On ma duże doświadczenie w komunikacji technologii opieki zdrowotnej i zarządzaniu opieką, a także w strategiach dotarcia do pacjentów. Ze względu na zdiagnozowaną u niego FTD Kevin chciałby współpracować z organizacjami opieki zdrowotnej, aby szerzyć wiedzę i pomagać osobom cierpiącym na FTD. 

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Anna Fargusson, RN

Kalifornia

Ania Fargusson spędziła swoją karierę jako pielęgniarka dyplomowana i trzyma a Bachelor of Science in nursing. She earned anminterostomijnyTcertyfikacja terapeuty w zakresie leczenia ran i opieki stomijnej oraz certyfikatu zakładania wenflonu PIC. O 20 lata temu u Anny zdiagnozowano wariant behawioralny FTD i ona następnie stała się częścią badania genetycznego, w którym określony że ona ma C9orf72 wariant genetyczny. Dwadzieścia-osiem lat 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.  

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Debora 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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Roberta Meddaugha

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. Przed pracą w FTD Bob pracował jako biolog zajmujący się rybołówstwem, dziennikarz zajmujący się rolnictwem, specjalista ds. public relations i komunikacja konsultant, I A projektant baz danych. Bob przestał pracować w 2001 roku, ponieważ ciągle zapominał, nad czym pracował. Niestety, diagnoza Boba pojawiła się dopiero w 2006 roku z demencją, który później został dopracowany do behawioralne wariant FTD w 2007 r..  Aktywnie działał w AFTD i Ibyłego współprzewodniczącego AFTD Persons with FTD Advisory Council. Jest również przewodniczącym Miasto Des Rada doradcza ds. dostępu dla niepełnosprawnych w Moines. Mieszka sam ze swoimi dwoma psami — Kathy zmarła 21 lutego 2021 r.

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Amy Shives, lekarz medycyny

Waszyngton

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 lat i mają dwie dorosłe córki. Ich syn Frankie, Cavalier King Charles Spaniel i jego nowy brat Tommy, kociak pozostaje w domu.  

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Seth Stern, lekarz medycyny

Gruzja

Seth L. Stern, MD is a recently retired OB/GYN who concluded his practice after 37 lat oddanej służby pacjentom, niektórzy z nich przez pokolenia rodzinom. Podczas swojej kariery miał przywilej zapewniania opieki medycznej zarówno kobiety niebędące w ciąży, jak również kobiety w ciąży z różnymi schorzeniami 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 dziennik "Wall Street 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

Gruzja

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.