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.

The post FA: Impacts of Quality of Life and Mental Health appeared first on Fanconi Cancer Foundation.

Subtitulado en español.

The post Fertility for Males with Fanconi Anemia appeared first on Fanconi Cancer Foundation.

Subtitulado en español.

The post Fertility for Females with Fanconi Anemia appeared first on Fanconi Cancer Foundation.

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.

The post “Power to U”: New campaign to manage the increased risk for oral cancer appeared first on Fanconi Cancer Foundation.

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.

The post The Future of FA Cancer Research: The Fanconi Anemia Cancer Consortium appeared first on Fanconi Cancer Foundation.

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.

The post Improving Nutrition and Understanding Nutrient-sensing in Persons with Fanconi anemia appeared first on Fanconi Cancer Foundation.

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.

The post The NIH Center Comprehensive Program for Surveillance of Squamous Cell Carcinoma in Patients with FA appeared first on Fanconi Cancer Foundation.

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.

The post FARF Clinical Programs: Virtual Tumor Board & FA Registry appeared first on Fanconi Cancer Foundation.

The post Eltrombopag Clinical Trial Update 2022 appeared first on Fanconi Cancer Foundation.

Session Title: How to Talk to Children About FA
Invited Speakers: Pennie Grubbs and Rebekah Doshi, Cincinnati Children’s Hospital Medical Center
Session Air Date: November 10th, 2021

*Please note that this video offers ways in which to talk to children about FA in the context of acute medical care and in ways that are developmentally appropriate by age. It also offers suggestions as how to assist children with establishing age-appropriate coping methods during challenging or traumatic situations, including transplant and grief and loss. The presenters share an example of how to explain FA in terms of bone marrow failure and refer to Fanconi anemia as a blood disorder. We acknowledge that this would not be an appropriate way of describing the many complexities of the FA disease process, but that this example was specific to explaining bone marrow failure to a young child.

Have additional questions for the speakers? Email Pennie Grubbs and Rebekah Doshi directly.

Q: At what age is it appropriate to have an in-depth conversation about an FA diagnosis?

A: We always fall back to giving them what they need and then let your child take the lead. Sometimes when they have a doctor’s appointment that can be a good time to talk with them more about what is happening and ask them if they have any questions. You could start with a simple and short explanation then let them ask other questions or guide the conversation.

Q: Some families have adolescents or teenagers who might not really want to talk about FA or may not ask about it. Do you have any recommendations for starting these conversations?

A: We would think that they will want to know more when it directly affects them like a symptom or even how it will influence their relationships with their peers. You can help them understand that there are behaviors or actions that will more negatively affect their bodies differently than their peers. We do recognize that it is probably very challenging to have these conversations. As a parent you can only try your best even if you tiptoe a little around the issue. You can share with them that you just want to make sure they know why it is important that we are having this conversation and what that means for them now and in the future.

Q: Are there ways to help a child (around 8) who is about to go through bone marrow transplant better understand, especially when they don’t want to talk about it and will even change the subject when they are asked about it?

A: Firstly, this sounds very normal and typical of children of that age. We would suggest giving the information they ask for or the information he needs to know at that time. You can break down what is about to happen to them and hopefully you have a child life specialist or somebody at the hospital that will help the child understand what is going to happen before each step of the journey. You can always ask them if they want to know more or see pictures and some children say no. If they say no, then respect that and maybe try again later.

Q: When my son was getting blood draws before a procedure, his child life specialist (he was 6 when this happened) tried to show them all the supplies/tools they use to put in an IV line and draw blood. He seemed to understand, but when it came time to do the actual procedure he really freaked out and got upset. In the past, I had asked the nurses to give him verset to help him relax and not fight the needle. I’m thinking of going back to that next time. What are your thoughts on that?

A: This is also very typical. Often fear and anxiety still kick in even after conversations about what to expect. This very normal and we know all practices are different in different hospitals. Some children might need a little medication to help them relax and remember that you are your child’s advocate. You can go in and discuss your concerns while exploring options to help your child whether that’s medication or alternative ways to explaining things. Having a needle come at you can be very scary so as a parent you can ask about medication or maybe you ask if they can sit in a chair with their iPad instead of being on their side or if they can be in your lap. It really comes down to you knowing your child best and if they need a little of something to help and the hospital is willing to do it then do it.

The post How to Talk to Children About Fanconi anemia (subtitulado ES) appeared first on Fanconi Cancer Foundation.