Adults Archives - Fanconi Cancer Foundation https://fanconi.org/resources-category/adults/ Pioneering Research for a Brighter Tomorrow. Wed, 30 Oct 2024 18:55:08 +0000 en-US hourly 1 https://wordpress.org/?v=6.9.4 https://fanconi.org/wp-content/uploads/2024/04/cropped-fanconi-favicon-32x32.png Adults Archives - Fanconi Cancer Foundation https://fanconi.org/resources-category/adults/ 32 32 FA: Impacts of Quality of Life and Mental Health https://fanconi.org/resources/fa-impacts-of-quality-of-life-and-mental-health/ Wed, 01 Mar 2023 09:39:00 +0000 https://staging.fanconi.org/resources/fa-impacts-of-quality-of-life-and-mental-health/ This session discusses common mental health challenges faced by adults living with FA and recommendations for advocating for mental health needs with primary care teams.

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]]> This session discusses common mental health challenges faced by adults living with FA, recommendations for advocating for mental health needs with primary care teams, and strategies for improving mental health. Researchers also describe the Psychosocial Experiences of Adults with Fanconi Anemia (FA) Study that opened for enrollment in fall 2022.

Speaker Bios:

Megan Voss holds a doctorate of nursing practice with experience in the speciality areas of oncology, integrative health, and mental health care. She has been working with adolescents and young adults with a diagnosis of Fanconi Anemia at the University of Minnesota since 2014. And her research focuses on better understanding the incidence of mental illness in the FA community and other factors that impact quality of life.

Kathleen Bogart, PhD is an associate professor of psychology at Oregon State University. She studies mental health in people with rare disorders, including Fanconi Anemia, and has a rare disorder herself. An advocate for people with rare disorders and disabilities, she serves on several boards including the American Psychological Association Committee on Disability Issues in Psychology and the Moebius Syndrome Foundation Scientific Advisory Board.

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]]> The NIH Center Comprehensive Program for Surveillance of Squamous Cell Carcinoma in Patients with FA https://fanconi.org/resources/the-nih-center-comprehensive-program-for-surveillance-of-squamous-cell-carcinoma-in-patients-with-fa/ Fri, 16 Dec 2022 09:12:00 +0000 https://staging.fanconi.org/resources/the-nih-center-comprehensive-program-for-surveillance-of-squamous-cell-carcinoma-in-patients-with-fa/ Neelam Giri and Sharon Savage cover a brief description of the protocol to prospectively evaluate and follow patients with FA at high risk of SCC with screening at regular intervals.

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]]> Neelam Giri and Sharon Savage’s talk will cover a brief description of the protocol to prospectively evaluate and follow patients with FA at high risk of SCC with screening at regular intervals. This study incorporates oral brush biopsy with diagnostic cytology and DNA cytometry for oral cancer surveillance utilizing standard operating procedures and teaching materials developed by the FABB team. The protocol also includes regular screening for esophageal and anogenital cancers. This study is part of the FA cancer consortium and has a strong collaborative component. In addition to streamlining cancer surveillance for patients with FA, the study includes collection and sharing of biospecimen for identification of predictive biomarkers of cancer development to facilitate the advancement of preventive therapies. Our central goal is to establish a framework for cancer screening, prevention, and therapeutic trials for FA through collaboration and sharing of research resources to reduce the burden of cancer in FA.

Presented at the 2022 Retreat for Adults with FA in Austin, Texas.

En Español
La charla de Neelam Giri y Sharon Savage abarcará una breve descripción del protocolo para evaluar y seguir prospectivamente a los pacientes con AF de alto riesgo de CCE con cribado a intervalos regulares. Este estudio incorpora la biopsia por cepillado oral con citología diagnóstica y citometría de ADN para la vigilancia del cáncer oral utilizando procedimientos operativos estándar y materiales didácticos desarrollados por el equipo de FABB. El protocolo también incluye el cribado regular del cáncer esofágico y anogenital. Este estudio forma parte del consorcio del cáncer de AF y tiene un fuerte componente de colaboración. Además de agilizar la vigilancia del cáncer para los pacientes con FA, el estudio incluye la recogida y el intercambio de muestras biológicas para la identificación de biomarcadores predictivos del desarrollo del cáncer para facilitar el avance de las terapias preventivas. Nuestro objetivo central es establecer un marco para el cribado del cáncer, la prevención y los ensayos terapéuticos para la FA a través de la colaboración y el intercambio de recursos de investigación para reducir la carga del cáncer en la FA.

Presentado en el Retiro 2022 para Adultos con AF en Austin, Texas.

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]]> Gynecologic Cancer & Fanconi Anemia: What You Need to Know https://fanconi.org/resources/gynecologic-cancer-fanconi-anemia-what-you-need-to-know/ Thu, 30 Jun 2022 10:42:00 +0000 https://staging.fanconi.org/resources/gynecologic-cancer-fanconi-anemia-what-you-need-to-know/ Dr. Katy Pennington discusses gynecologic cancer in Fanconi anemia

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]]> Dr. Katy Pennington discusses gynecologic cancer in Fanconi anemia

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]]> Neuroinflammation Issues in Adults with Fanconi Anemia https://fanconi.org/resources/neuroinflammation-issues-in-adults-with-fanconi-anemia/ Thu, 30 Jun 2022 10:38:00 +0000 https://staging.fanconi.org/resources/neuroinflammation-issues-in-adults-with-fanconi-anemia/ Neuroinflammation Issues in Adults with FA with Stella Davies, MD, Fanconi Anemia Comprehensive Care Program, Cincinnati Children’s Hospital

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]]> Neuroinflammation Issues in Adults with FA with Stella Davies, MD, Fanconi Anemia Comprehensive Care Program, Cincinnati Children’s Hospital

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]]> Transitioning to Adult Care https://fanconi.org/resources/transitioning-to-adult-care/ Tue, 05 Oct 2021 10:32:00 +0000 https://staging.fanconi.org/resources/transitioning-to-adult-care/ As rare disease patients approach adulthood, they face the transition from parent-supervised pediatric care to more independent adult models & taking ownership of their own care

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]]> Quercetin Study for Adults with FA (subtitulado ES) https://fanconi.org/resources/quercetin-study-for-adults-with-fa-subtitulado-es/ Sun, 03 Oct 2021 06:56:00 +0000 https://staging.fanconi.org/resources/quercetin-study-for-adults-with-fa-subtitulado-es/ What is quercetin and how is it used in the context of FA?

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]]> Partnership Between Researchers, Docs, Adults (subtitulado ES) https://fanconi.org/resources/partnership-between-researchers-docs-adults-subtitulado-es/ Sun, 03 Oct 2021 06:52:00 +0000 https://staging.fanconi.org/resources/partnership-between-researchers-docs-adults-subtitulado-es/ How can adults with FA and researchers partner to bring better treatments faster?

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