Unidos por la esperanza en la Reunión Anual de Familias 2024

El sábado 16 de marzo celebramos en Madrid nuestra Reunión Anual de Familias 2024, donde volvieron a acudir familias de toda España que tuvieron la oportunidad de encontrarse e interactuar entre ellas, así como con los diferentes profesionales sanitarios, investigadores y ponentes que participaron. Este encuentro, nuevamente, permitió a las familias conocer de primera mano los progresos de la Fundación, de las investigaciones en curso y las novedades en el plano social.

El día comenzó con las palabras de bienvenida y agradecimiento de José Ángel Aibar, presidente de la Fundación Síndrome de Dravet, quien pidió un minuto de silencio en homenaje a las personas que desgraciadamente ya no están entre nosotros.

A continuación, Amparo Bastos, miembro del Patronato de la Fundación dirigió la sesión de presentación de familias, explicando además que desde la Fundación se quiere dar respuesta a todas las necesidades detectadas por parte de las familias y por ello, se ha incorporado al equipo una Trabajadora Social.

En esa línea, José Ángel presentó las actividades actuales de la Fundación Síndrome de Dravet e hizo alusión a la importancia de nuestra Fundación en el apoyo a las familias, así como en el fomento de la investigación y el desarrollo de nuevos fármacos, todo con el fin de mejorar la calidad de vida de las personas y familias con síndrome de Dravet.

Desde el Hospital Sant Pau de Barcelona, Roger Esmel y Laia Turón presentaron los estudios que están llevando a cabo junto con nuestra Fundación, entre ellos, sobre las implicaciones cardíacas en el síndrome de Dravet, ya que la incidencia de SUDEP suele ser más elevada en personas con este síndrome y de ahí la importancia de realizar investigaciones más completas y detalladas.

La Dra. Danielle Andrade, de la Universidad de Toronto, una neuróloga experta en la investigación del síndrome de Dravet en adultos, nos habló sobre la evolución de la enfermedad con el avance de la edad y nos presentó datos sobre la longevidad de pacientes con síndrome de Dravet y las causas más comunes de fallecimiento. Este es un aspecto que puede ser desalentador, pero necesario que haya más investigaciones de este tipo para poder dar a conocer y prevenir la progresión de la enfermedad y las causas más comunes de mortalidad. 

Tras un descanso, el Dr. Antonio Gil-Nagel, del Hospital Ruber Internacional, explicó el fenotipado de los fenómenos no epilépticos en el síndrome de Dravet. Más allá de las crisis epilépticas, se centró en la alteración en la conducta, en el sueño, trastorno del aprendizaje, problemas de dentición, óseos, hiper o hipotonía, factores que tienen un efecto negativo la calidad de vida de la persona que sufre síndrome de Dravet.

Por otra parte, el Dr. Franck Kalume, de la Universidad de Washington, nos sumergió en el viaje desde el descubrimiento de los canales iónicos hasta el la aplicación de terapias avanzadas para el síndrome de Dravet. Habló sobre el trabajo que él mismo llevó a cabo en el laboratorio junto con el profesor Catterall, donde se descubrió el canal de sodio Nav 1.1, responsable de las manifestaciones del síndrome de Dravet en la mayoría de los pacientes, y de cómo esto nos lleva ahora a poder aplicar terapias avanzadas que puedan llegar a corregir los efectos de las mutaciones genéticas en Nav 1.1.

A continuación, nuestra Directora Científica, Simona Giorgi, explicó los fármacos que hay en camino, tanto los fármacos sintomáticos que mejoran el control de las crisis, como las terapias avanzadas, las cuales representan una esperanza para el futuro del Dravet.

Esta última presentación dio paso a María Candida Vila, Directora de Asuntos Médicos de Encoded Therapeutics, que describió la introducción a la terapia génica mediada por virus adenoasociado (AAV) como opción de tratamiento para enfermedades genéticas, remarcando que cualquier mejora es importante tanto para los pacientes con síndrome de Dravet como para sus cuidadores.

Tras esto, la Dra. María Lorenzo, neuropediatra en el Hospital Universitario Puerta del Hierro, llevó a cabo una presentación sobre el manejo del estatus epiléptico y reanimación cardiopulmonar en el síndrome de Dravet. Además, para que la explicación de reanimación fuera práctica, la doctora pidió a dos familiares realizar dicha maniobra con maniquíes y así poder apreciar la diferencia de técnica entre niños y adultos.

Esto dio paso a la pausa de la comida, en la que las personas asistentes pudieron compartir un ambiente afable que permitió que las familias tuvieran la oportunidad de intercambiar experiencias con otras que conviven con la misma enfermedad.

A posteriori, Neus Mari de Synaptia Health Projects abordó la cuestión de qué hacer cuando las crisis epilépticas mejoran pero empeora la conducta. La profesional incidió en las diferentes fases por las que puede pasar la persona con síndrome de Dravet (fase de dependencia hacia la persona cuidadora, proceso de separación y fase de individualización), por ello, resulta imprescindible trabajar en la autorregulación. En esta línea, Israel Bárcenas ofreció pautas sobre técnicas de autoprotección para el síndrome de Dravet. Es importante adquirir herramientas para poder hacer frente a las alteraciones graves de la conducta que podrían llegar a surgir.

A continuación, Natalia Rubio, presidenta de la Asociación Estatal Sexualidad y Discapacidad, nos hizo ver la importancia del papel de las familias en la educación afectivo-sexual de las personas con síndrome de Dravet. Nos dio la clave a los familiares para crear un entorno seguro con relación a la intimidad corporal de las personas con síndrome de Dravet y nos habló también de crear un “jardín de la intimidad” para que la propia persona tenga su espacio para poder hacer aquellas actividades que les resulte placenteras.

Tras una breve pausa, la última ponente fue Valeria Herrera, Trabajadora Social de nuestra Fundación, que explicó el procedimiento a seguir para la solicitud de dependencia, discapacidad, dichas revisiones, sobre la tarjeta acreditativa de discapacidad, los diferentes beneficios que se puede tener y, por último, sobre las medidas legales de apoyo.

Nuestro Presidente, José Ángel Aibar, cerró la Reunión Anual de Familias 2024 con la entrega de los Premios Dravet 2024, que reconocen la labor excepcional realizada a favor del síndrome de Dravet en el ámbito científico, institucional o social:

  • Franck Kalume, por su excepcional calidad humana y dedicación incansable a la investigación del síndrome de Dravet.
  • La familia Jiménez Olivares, a sus familiares y al pueblo de Jumilla por su compromiso con nuestra causa.
  • La empresa SIGAUS, por su apoyo y compromiso con la Fundación Síndrome de Dravet.

En paralelo a las charlas, los niños y adultos con síndrome de Dravet y sus hermanos pudieron disfrutar de diferentes actividades organizadas. Tuvimos el placer de contar con personas voluntarias de diferentes asociaciones, como Circo Piruleto, Voluntarios por Madrid, Rebel Legion, y ¡cómo no!, nuestro Superdravetino, que le puso aún más humor al encuentro. Gracias a sus actividades, padres y madres pudieron escuchar y aprender de las diferentes ponencias y tener este espacio para sí mismos.

Con la mirada puesta en el horizonte de esperanza que cada año se renueva, desde la Fundación Síndrome de Dravet cerramos la Reunión Anual de Familias 2024 con el corazón lleno de gratitud y el compromiso firme de seguir avanzando juntos. Cada sonrisa compartida, cada experiencia intercambiada y cada conocimiento adquirido nos acerca más a un futuro donde el síndrome de Dravet no limite las vidas de quienes lo padecen. Nos despedimos, no como un adiós, sino como un hasta pronto, con la certeza de que cada paso que damos es un paso hacia adelante en esta lucha.

¡Hasta la próxima reunión, el 5 de abril de 2025, donde seguiremos construyendo un camino de inclusión, apoyo y avances científicos!

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TERMS & CONDITIONS

The Dravet Syndrome Conference 2023 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

The conference shall take place at the Official College of Nursing of Madrid, at Avenida de Menéndez Pelayo, 93, 28007 Madrid, Spain, on Thursday 23rd of March 2023. Attendance to this conference is free of charge, but mandatory for organisational reasons.

Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

The conference registration includes: Attendance to all sessions, oral and visual presentations, all coffee and lunch breaks, and conference documentation with all information about the event. The registration does not include travel and accommodation costs or any other personal expenses.

Admittance to the conference without registration cannot be granted.

Conference Attendance
Upon arrival at the Official College of Nursing of Madrid the day of the event, all participants have to check-in at the onsite Conference Registration Desk. The desk will open on 23rd of March at 8:30 a.m. Upon registration onsite, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, and lunch and coffee breaks.

Cancellation Policy
Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, public health measures, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative format/venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at [email protected] within a minimum of 10 days prior the event. Failure to attend the event without prior written notification by email may incur a no-show fee, which shall cover individual organizational, material and catering costs.

Name Change
All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at [email protected] before 16th of March 2023. The procedure allows giving the last name, first name, and email address of the new participant.

Personal Data
Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

Photography
The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. Author’s presentation slides shall not be photographed by any conference participant. 

Disclaimer
The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

Copyright
The participant is allowed to use the conference documentation exclusively for his/her personal needs.

TERMS & CONDITIONS

The European Dravet Syndrome Advanced Therapies (EDSAT) Meeting 2023 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

The conference shall take place at the Official College of Nursing of Madrid, at Avenida de Menéndez Pelayo, 93, 28007 Madrid, Spain, on Friday 24th of March 2023. Attendance to this conference is free of charge, but mandatory for organisational reasons.

Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

The conference registration includes: Attendance to all sessions, oral and visual presentations, all coffee and lunch breaks, and conference documentation with all information about the event. The registration does not include travel and accommodation costs or any other personal expenses.

Admittance to the conference without registration cannot be granted.

Conference Attendance
Upon arrival at the Official College of Nursing of Madrid the day of the event, all participants have to check-in at the onsite Conference Registration Desk. The desk will open on 24th of March at 8:30 a.m. Upon registration onsite, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, and lunch and coffee breaks.

Cancellation Policy
Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, public health measures, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative format/venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at [email protected] within a minimum of 10 days prior the event. Failure to attend the event without prior written notification
by email may incur a no-show fee, which shall cover individual organizational, material and catering costs.

Name Change
All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at [email protected] before 17th of March 2023. The procedure allows giving the last name, first name, and email address of the new participant.

Personal Data
Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

Photography
The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. Author’s presentation slides shall not be photographed by any conference participant.

Disclaimer
The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

Copyright
The participant is allowed to use the conference documentation exclusively for his/her personal needs.

TERMS & CONDITIONS

The European Dravet Syndrome Advanced Therapies (EDSAT) Meeting 2022 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

The conference shall take place at the Illustrious Official College of Physicians of Madrid, at Calle de Santa Isabel, 51, 28012 Madrid, Spain, on Friday 1st of April 2022. Attendance to this conference is free of charge, but mandatory for organisational reasons. Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

The conference registration includes: Attendance to all sessions, oral and visual presentations, all coffee and lunch breaks, and conference documentation with all information about the event. The registration does not comprise travelling and accommodation costs or any other personal expenses.

Admittance to the workshop without registration cannot be granted.

Conference Attendance
Upon arrival at the Illustrious Official College of Physicians of Madrid the day of the event, all participants have to register at the onsite Conference Registration Desk. The desk will open on 1st of April at 8:30 a.m. Upon registration onsite, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, and lunch and coffee breaks.

Cancellation Policy
Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, public health measures, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative format/venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at [email protected] within a minimum of 10 days
prior the event. Failure to attend the event without prior written notification
by email may incur a no-show fee, which shall cover individual organizational,
material and catering costs.

Name Change
All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at [email protected] before 24th of March 2022. The procedure allows giving the last name, first name, and email address of the new participant.

Personal Data
Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

Photography
The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. Author’s presentation slides shall not be photographed by any conference participant.

Disclaimer
The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

Copyright
The participant is allowed to use the conference documentation exclusively for his/her personal needs.

TERMS & CONDITIONS

The Dravet Syndrome Conference 2022 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

The conference shall take place at the Illustrious Official College of Physicians of Madrid, at Calle de Santa Isabel, 51, 28012 Madrid, Spain, on Thursday 31st of March 2022. Attendance to this conference is free of charge, but mandatory for organisational reasons. Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

The conference registration includes: Attendance to all sessions, oral and visual presentations, all coffee and lunch breaks, and conference documentation with all information about the event. The registration does not include travel and accommodation costs or any other personal expenses.

Admittance to the conference without registration cannot be granted.

Conference Attendance
Upon arrival at the Illustrious Official College of Physicians of Madrid the day of the event, all participants have to register at the onsite Conference Registration Desk. The desk will open on 31st of March at 8:30 a.m. Upon registration onsite, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, and lunch and coffee breaks. 

Cancellation Policy
Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, public health measures, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative format/venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at [email protected] within a minimum of 10 days prior the event. Failure to attend the event without prior written notification by email may incur a no-show fee, which shall cover individual organizational, material and catering costs.

Name Change
All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at [email protected] before 24th of March 2022. The procedure allows giving the last name, first name, and email address of the new participant.

Personal Data
Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

Photography
The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. Author’s presentation slides shall not be photographed by any conference participant. 

Disclaimer
The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

Copyright
The participant is allowed to use the conference documentation exclusively for his/her personal needs.