Español Archives - Fanconi Cancer Foundation https://fanconi.org/resources-category/espanol/ Pioneering Research for a Brighter Tomorrow. Wed, 30 Oct 2024 18:48:02 +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 Español Archives - Fanconi Cancer Foundation https://fanconi.org/resources-category/espanol/ 32 32 Fanconi Anemia Neurological Syndrome: What We Know So Far (2023) https://fanconi.org/resources/fanconi-anemia-neurological-syndrome-what-we-know-so-far-2023/ Fri, 13 Oct 2023 10:58:00 +0000 https://staging.fanconi.org/resources/fanconi-anemia-neurological-syndrome-what-we-know-so-far-2023/ Dr. Eunike Velleuer describes a very rare manifestation of Fanconi anemia, known as Fanconi Anemia-Associated Neurological Syndrome (FANS). FARF is working with the research community to better understand FANS and educate clinicians and families. La Dra. Eunike Velleuer describe una manifestación muy rara de la anemia de Fanconi, conocida como síndrome neurológico asociado a la […]

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]]> Dr. Eunike Velleuer describes a very rare manifestation of Fanconi anemia, known as Fanconi Anemia-Associated Neurological Syndrome (FANS). FARF is working with the research community to better understand FANS and educate clinicians and families.

La Dra. Eunike Velleuer describe una manifestación muy rara de la anemia de Fanconi, conocida como síndrome neurológico asociado a la anemia de Fanconi (FANS). FARF está trabajando con la comunidad de investigación para comprender mejor a FANS y educar a los médicos y las familias.

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]]> Fanconi Anemia 101: For Families Affected by FA (2023) https://fanconi.org/resources/fanconi-anemia-101-for-families-affected-by-fa-2023/ Fri, 13 Oct 2023 10:47:00 +0000 https://staging.fanconi.org/resources/fanconi-anemia-101-for-families-affected-by-fa-2023/ Just diagnosed with Fanconi anemia? Start here. Dr. Parinda Mehta from Cincinnati Children’s Hospital Medical Center delivers an updated “FA 101” to families at the 2023 FA Family Retreat. ESPAÑOL:¿Recientemente diagnosticado con anemia de Fanconi? Empieza aqui. La Dra. Parinda Mehta del Centro Médico del Hospital Infantil de Cincinnati entrega un “FA 101” actualizado a […]

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]]> Just diagnosed with Fanconi anemia? Start here.

Dr. Parinda Mehta from Cincinnati Children’s Hospital Medical Center delivers an updated “FA 101” to families at the 2023 FA Family Retreat.

ESPAÑOL:
¿Recientemente diagnosticado con anemia de Fanconi? Empieza aqui.

La Dra. Parinda Mehta del Centro Médico del Hospital Infantil de Cincinnati entrega un “FA 101” actualizado a las familias en el Retiro Familiar FA 2023.

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]]> 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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]]> Fertility for Males with Fanconi Anemia https://fanconi.org/resources/fertility-for-males-with-fanconi-anemia/ Fri, 16 Dec 2022 10:08:00 +0000 https://staging.fanconi.org/resources/fertility-for-males-with-fanconi-anemia/ Anne Casson is a fertility nurse at Memorial Sloan Kettering, an FA Center of Excellence. In this video she speaks about fertility in males with Fanconi anemia. SUBTITULOS ES

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]]> Anne Casson is a fertility nurse at Memorial Sloan Kettering, an FA Center of Excellence. In this video she speaks about fertility in males with Fanconi anemia.

Subtitulado en español.

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]]> “Power to U”: New campaign to manage the increased risk for oral cancer https://fanconi.org/resources/power-to-u-new-campaign-to-manage-the-increased-risk-for-oral-cancer/ Fri, 16 Dec 2022 09:22:00 +0000 https://staging.fanconi.org/resources/power-to-u-new-campaign-to-manage-the-increased-risk-for-oral-cancer/ We focus on early detection by providing all different kinds of support (including clinicians and individuals with FA)

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]]> We all know the sooner a cancer is detected, the higher chance of low-invasive and successful treatment and better life quality. Therefore, we developed a new campaign taking a radically different approach to detecting cancer early for patients, when it is easier to treat called “Power to U”! We want to tackle your fears of developing cancer head-on and help give you the tools to do self-examinations.

We are part of the newly established FACC – Fanconi Anemia Cancer Consortium – initiated by FARF. You will get to know at this year’s meeting all aspects of this consortium and will have the opportunity to meet the people behind the scene. Our part in the FACC is focusing on early detection by providing all different kinds of support (including clinicians and individuals with FA). To achieve this goal, together with FA adults in different countries, we developed a unique special self-empowering training program.

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

En Español
Todos sabemos que cuanto antes se detecte un cáncer, mayores serán las posibilidades de un tratamiento poco invasivo y exitoso y una mejor calidad de vida. ¡Por lo tanto, desarrollamos una nueva campaña con un enfoque radicalmente diferente para detectar el cáncer temprano para los pacientes, cuando es más fácil de tratar, llamada “Poder para ti”! Queremos abordar de frente sus temores de desarrollar cáncer y brindarle las herramientas para realizar autoexámenes. Desarrollamos un programa especial único de capacitación para el autoempoderamiento. Lo invitamos a aprender y capacitarse en solo una hora: · Cómo realizar un autoexamen bucal completo · Qué es una buena documentación y qué tan fácil puede hacerlo · Qué tipo de cambios se encuentran en las cavidades bucales de las personas con FA · ¿Qué hacer y dónde obtener ayuda si ve cambios? ¿Listo para ser parte de esta nueva campaña por más “Poder para ti”? ¡Vamos!

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

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]]> The Future of FA Cancer Research: The Fanconi Anemia Cancer Consortium https://fanconi.org/resources/the-future-of-fa-cancer-research-the-fanconi-anemia-cancer-consortium/ Fri, 16 Dec 2022 09:20:00 +0000 https://staging.fanconi.org/resources/the-future-of-fa-cancer-research-the-fanconi-anemia-cancer-consortium/ FARF Scientific Director, Isis Sroka, talks about the newly developed Fanconi Anemia Cancer Consortium (FACC).

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]]> FARF Scientific Director, Isis Sroka, talks about the newly developed Fanconi Anemia Cancer Consortium (FACC). This talk will provide an overview of the FACC, which represents a collaborative group of investigators, along with their academic medical centers, the National Institutes of Health, patient advocacy groups (PAGs), and patients affected by Fanconi anemia (FA). The FACC was established to create a collaborative partnership between the FA community and a network of expert FA clinicians and physician scientists who have expertise and experience in the diagnosis and management of FA cancers and FA cancer research. The FACC aims to streamline cancer care decision-making processes for patients with FA through evidence-based research.

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

En Español

La Directora Científica de la FARF, Isis Sroka, habla sobre el recién creado Consorcio de Cáncer de Anemia de Fanconi (FACC). Esta charla proporcionará una visión general del FACC, que representa un grupo de colaboración de investigadores, junto con sus centros médicos académicos, los Institutos Nacionales de Salud, los grupos de defensa de los pacientes (PAG) y los pacientes afectados por la anemia de Fanconi (FA). El FACC se estableció para crear una asociación de colaboración entre la comunidad de FA y una red de médicos clínicos y científicos expertos en FA que tienen conocimientos y experiencia en el diagnóstico y el tratamiento de los cánceres de FA y en la investigación del cáncer de FA. El FACC tiene como objetivo agilizar los procesos de toma de decisiones sobre el cuidado del cáncer para los pacientes con FA a través de la investigación basada en la evidencia.

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

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]]> Improving Nutrition and Understanding Nutrient-sensing in Persons with Fanconi anemia https://fanconi.org/resources/improving-nutrition-and-understanding-nutrient-sensing-in-persons-with-fanconi-anemia/ Fri, 16 Dec 2022 09:16:00 +0000 https://staging.fanconi.org/resources/improving-nutrition-and-understanding-nutrient-sensing-in-persons-with-fanconi-anemia/ Lindsey Romick explores the findings of a recent clinical research study tracing nutrient uptake and use in persons with FA.

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]]> Lindsey Romick’s talk focuses on the findings of a recent clinical research study tracing nutrient uptake and use in persons with FA. We will discuss nutrient preferences in both high and low BMI persons with FA, the impacts of hormone production and sensing on carbohydrate and fat metabolism, and the importance of choosing our foods and supplements wisely with the goal of achieving a healthy and well-nourished body.

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

Esta presentación se enfocará en explorar los hallazgos de un estudio de investigación clínica reciente que rastrea la absorción y el uso de nutrientes en personas con FA. Analizaremos las preferencias nutricionales en personas con FA con IMC alto y bajo, los efectos de la producción y detección de hormonas en el metabolismo de carbohidratos y grasas y la importancia de elegir nuestros alimentos y suplementos sabiamente con el objetivo de lograr un cuerpo sano y bien nutrido.

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

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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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]]> FARF Clinical Programs: Virtual Tumor Board & FA Registry https://fanconi.org/resources/farf-clinical-programs-virtual-tumor-board-fa-registry/ Fri, 16 Dec 2022 09:00:00 +0000 https://staging.fanconi.org/resources/farf-clinical-programs-virtual-tumor-board-fa-registry/ FARF's Clinical Science Program Manager, Andrea Ronan, gives an overview of the FARF clinical programs, including the Fanconi Anemia Registry and Virtual Tumor Board.

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]]> FARF’s Clinical Science Program Manager, Andrea Ronan, gives an overview of the FARF clinical programs, including an update regarding improvements coming to the Fanconi Anemia Registry. Andrea will also discuss the Fanconi Anemia Virtual Tumor Board (VTB) to answer common questions, such as what service the program provides and when participants should contact the VTB.

Una descripción general de los programas clínicos de FARF, incluida una actualización sobre las mejoras que se realizarán en el Registro de anemia de Fanconi. Andrea también hablará sobre el comité de tumores virtual de la anemia de Fanconi (VTB) para responder preguntas comunes, como qué servicio brinda el programa y cuándo los participantes deben comunicarse con VTB.

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

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]]> Gene Therapy Clinical Trial Update 2022 https://fanconi.org/resources/gene-therapy-clinical-trial-update-2022/ Tue, 07 Jun 2022 09:48:00 +0000 https://staging.fanconi.org/resources/gene-therapy-clinical-trial-update-2022/ Researchers give an update on the FANCA Gene Therapy Clinical Trial in the US and Spain

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]]> Rocket Pharma has sponsored gene therapy clinical trials to study the use of autologous (from the patient) stem cells transduced with a lentiviral vector carrying the wild type (normal) FANCA gene. The goal of the study is to determine safety and preliminary efficacy of autologous gene correction for the FANCA gene in hematopoietic stem cells without the use of harmful conditioning agents. This Q&A session was aired in February 2022 as a part of the Fanconi Anemia Research Fund FA Connect Series.

ES: Rocket Pharma ha patrocinado ensayos clínicos de terapia génica para estudiar el uso de células madre autólogas (del paciente) transducidas con un vector lentiviral que lleva el gen FANCA de tipo salvaje (normal). El objetivo del estudio es determinar la seguridad y la eficacia preliminar de la corrección genética autóloga del gen FANCA en células madre hematopoyéticas sin el uso de agentes acondicionadores nocivos. Esta sesión de preguntas y respuestas se emitió en febrero de 2022 como parte de la serie FA Connect del Fanconi Anemia Research Fund.

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