jueves, 29 de mayo de 2014

Protocolo Observacional para niños en riesgo de Huntington Hospital ABC 7 de Mayo 2014

Tienes hijos en riesgo de Huntington? protocolo unica en el mundo, imagina estudios gratis año con año para ver como estan en el Hospital ABC de Santa FE. Platica este 7 de mayoa las 8PM aparten sus lugares con fundacionveronicaruiz@gmail.com


Como sabes, el Hospital ABC es mi grupo de neurologos e investigadores, Asesores de la Fundación Verónica Ruiz, el Dr. Ernesto Ramirez Navarrete Jefe de Neurologia y Neuropediatria liderea un protocolo de Investigacion UNICO,se trata de asesorarnos de como conducirnos con una sitiacion de riesgo.
Siempre hay dos decisiones importantes, una, saber si se tiene la enfermedad y la otra es decidir no saber pero actual responsablemente al respecto. El recibir una informacion de positividad de la prueba molecular lleva muchas veces a que la gente se quite la vida. El miedo de que tu hijo lo tenga.

Esta es NUESTRA OPORTUNIDAD de participar en un protocolo de investigación que puede
ayudarte a ti, a tu familia y a los mexicanos afectados de enfermedades neurodegenerativas progresivas
.
Este protocolo está orientado a personas que estén en riesgo de tener Enfermedad
de Huntington, en especial para niños que son familiares de una persona con esta
enfermedad.

“Estudio observacional a largo plazo de pacientes menores a 18 años en
riesgo genético o con diagnóstico de enfermedad de Huntington a través de
un seguimiento anual multidisciplinario”
.
 
El ABC tiene un centro neurologico siendo un centro asesor de seguir las personas en risego hasta que los detectemos hasta que presenten sintomas, es un protocolo de investigacion formal sin un test predictivo.
la sesión es para los padres de familia.
No deben venir niños ni adolescentes.
Incluso sugiero que si hay adultos muy jóvenes, primero vengan los padres.
Y en una segunda sesión vengan los adultos jóvenes.
  
Nos  vemos en el Hospital ABC de Santa Fe.
el miercoles 23 de ENERO 2014
A las 20:00hrs 
por favor confirma conmigo y pasame tu celular
LOS AMO
Veronica Ruiz

QUE DIOS ME LOS SIGA BENDICIENDO


fundacionveronicaruiz@gmail.com



“Diagnosis is not destiny”


Our mission is to serve those people and their families that have the neurodegenerative Huntington’s Disease. This is done through creating awareness in society and at the same time integrating support for those affected. In addition to that, we contribute with institutions and organizations in the investigation of Huntington’s Disease.  
NEWS RELEASE
If you are reading this email, it means that in one way or another you’re in contact with the Veronica Ruiz Foundation.
In accordance with our mission, we want to make you aware that we are participating in a protocol investigation with the Neurology Center, which is located at the ABC Medical Center in Mexico City. The investigation is oriented towards people that are at risk for Huntington’s Disease. Especially towards those children that are direct family members of those affected with this disease.
At the present time The Neurology Center ABC, serves as a medical consultant to the Veronica Ruiz Foundation. Thanks to this alliance, a long term observable protocol investigation has developed and is titled as follows…”Long term observational study during an annual multidisciplinary tracing of patients under the age of 18 that are at genetic risk or that are diagnosed with Huntington’s Disease.”
Such protocol follows all national and international regulations towards human observational studies. It has been accepted by the Investigation Committee and the Investigation Ethics Committee of the ABC Medical Center. Also, the Vice President of Medical Matters at the ABC Medical Center, has approved the implementation of this study at this very facility.
If there is someone in your family with this disease, be aware that “Diagnosis is not Destiny.”  Inform yourself with us about everything related to neurodegenerative diseases like Huntington’s. In a responsible manner, please collaborate with us and with the Neurological Center at the ABC Medical Center, with the observational protocol investigation that we have described. Huntington’s Disease has not been studied in depth and we have to participate in order for this to occur.  It’s not about diagnosing if the person is positive, it’s about observing a person’s health during an annual period. Through this we hope to find symptomatologies that are not known and in a timely manner trace people that because of their family roots, might be positive for Huntington’s in the future.
There is NO COST to participating in the Observational Protocol Investigation. We only ask that you help us with one day a year every year. At that time there will be tests and observations performed on you and your direct family. These tests and observations are required by the Protocol.
Help the destiny of those of us that are at risk of having a neurodegenerative disease like Huntington’s.

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