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.
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
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.
