En 1990, Valentina Vidal W. y María Elisa Hernández, ambas con EM, por encontrarse absolutamente desamparadas respecto a la enfermedad, se reunieron con el Dr. Fernando Vergara, neurólogo, y la Sra. Marina Von Buengner, Vicepresidenta de la IFMS (International Federation of Multiple Sclerosis, como se denominaba entonces a la actual Multiple Sclerosis International Federation) quien tenía la misión de contactarse en Chile, con personas que tuvieran la inquietud de formar una institución contra la EM. Con el fin de la unión de varios médicos: neurólogos, oftalmólogos, un psiquiatra, asistente social, abogado (gestor de los actuales estatutos modificados) socios con EM, familiares y amigos se realizó la primera reunión constitutiva de la "CEM" el día 15 de julio de 1991 con domicilio en Galvarino Gallardo 1649, Santiago. Participaron los asesores médicos: Dr. Fernando Vergara. Dr. Jorge Castillo. Dr. Walter Feuerhake. Dra. María Luisa Fonck. Dr. Cristián Luco. Dr. Giorgo Agostini. Dra. Ana María Missana. Durante el año 1991, se realizaron diversos eventos, como desfiles de modas, juegos de naipes, ruedas de prensa, charlas, seminarios con médicos nacionales y extranjeros y se entregó información a socios desde Arica a Magallanes. Con el tiempo se entregaron trípticos informativos, folletos (uno técnico confeccionado por el Dr. Camilo Arriagada). Luis Patricio Sepúlveda viajó a Buenos Aires a un Seminario Internacional de EM y se ganaron proyectos de la Municipalidad de Las Condes. Además se compraron muebles de oficina, algunos implementos para discapacitados y un mini gimnasio para terapias físicas controladas (colchonetas, bicicletas estacionarias, paralelas, etc.
La corporación fue reconocida como miembro de la MSIF (Multiple Sclerosis International Federation). Gracias a esta afiliación, postularon al premio; 'WOLFENSOHN AWARD', a la señora Oriana García Santander, quien en ese momento cumplía el rol de tesorera de la "CEM". (Oriana García Santander renunció al cargo de tesorera en el año 2002. En el año 2003, renunció a la directiva de la corporación y desde el año 2004 al año 2009, trabajó como voluntaria, a través, de la "Fundación Distonía", con los pacientes con Distonía, en el Poli Neurológico, del Hospital Salvador, bajo el cuidado del Neurólogo; Dr. Roque Villagra. En el año 2009, la señora Oriana García Santander es elegida Presidenta de la Corporación Chilena contra la Esclerosis Múltiple "CEM", hasta la fecha.)
La corporación fue reconocida como miembro de la MSIF (Multiple Sclerosis International Federation). Gracias a esta afiliación, postularon al premio; 'WOLFENSOHN AWARD', a la señora Oriana García Santander, quien en ese momento cumplía el rol de tesorera de la "CEM". (Oriana García Santander renunció al cargo de tesorera en el año 2002. En el año 2003, renunció a la directiva de la corporación y desde el año 2004 al año 2009, trabajó como voluntaria, a través, de la "Fundación Distonía", con los pacientes con Distonía, en el Poli Neurológico, del Hospital Salvador, bajo el cuidado del Neurólogo; Dr. Roque Villagra. En el año 2009, la señora Oriana García Santander es elegida Presidenta de la Corporación Chilena contra la Esclerosis Múltiple "CEM", hasta la fecha.)
En la fotografía: premiación del 'Wolfenshon Award', para la señora Oriana García Santander, quien aparece junto a su hijo; Osvaldo Vigorena García, ambos en Melbourne, Australia, año 2001.
El Premio 'Wolfenshon Award' Consistió en:
Un Certificado de Reconocimiento al paciente con EM, que ayuda a otras personas con EM, con el nombre del premio: "Wolfensohn Award".
Dos pasajes ida y vuelta. Un pasaje es para el paciente ganador y el otro, es para el acompañante del paciente.
Estadía pagada completa.
Este premio Internacional Anual, es financiando por la misma organización extranjera, la cual entrega dicho premio, a los pacientes con EM que se destacan por su solidaridad y capacidad de ayuda humanitaria, con otros pacientes de EM.
Ver página Internacional aquí: Premio para Oriana García Santander.
MSIF Address and Map
Multiple Sclerosis International Federation
Address: 3rd Floor Skyline House
200 Union Street
London
SE1 0LX
Tel: +44 (0) 20 7620 1911
Fax: +44 (0) 20 7620 1922
Email: info@msif.org
Web: http://www.msif.org
How to find us
James D. Wolfensohn Award Winner 2001
The Winner of the 2001 International Person with MS of the Year was Oriana García Santander from Chile.
Oriana García Santander
Oriana's first symptoms appeared in 1990 when she suffered numbness in her feet and legs, urinary incontinence problems and loss of balance. In May 1991, Oriana felt numbness in her hands and was treated for three days with IV corticoids. In June 1991, at the age of 42 years old, after a lumbar puncture, evoked potentials and an MRI, Oriana was diagnosed with benign MS and slight optic neuritis.
In 1993 Oriana had a crisis that caused her to lose control of her arms. She needed assistance in order to perform common tasks such as eating and getting dressed. Once recovered from it, she managed to become independent again. Symptoms that still remain are loss of balance, and difficulty to write and recall events. She also has burning and freezing sensations on the body. Heat tires her out and coldness tenses her. She also experiences fatigue, and more recently "electric shocks" on her right hand, the frequency of which have increased and extended to the whole arm.
In 1996 Oriana joined the Corporación Chilena Contra la Esclerosis Múltiple (CEM) - the Chilean Corporation Against MS. She became involved in many different activities such as fashion shows and bingo, and was elected as the CEM's treasurer in the same year. She is still CEM's treasurer, with responsibility for donations, fees, expenses, assets and preparing the yearly balance with an accountant. Oriana has been responsible for yearly project proposals and their presentation to funding bodies. Moreover, once the funding is obtained, she has to carry out the projects. This is how the CEM has been able to purchase some furniture, technical devices such as wheelchairs, canes, clinic beds and special machines in order to assemble a small gymnasium for physiotherapy treatments.
Oriana receives all of the CEM's telephone calls in her own house, being the first CEM contact for people with MS or their relatives. She is always willing to assist people and to grant shelter for people who have passed through moments of depression and anguish. She also tells members about upcoming meetings or CEM's activities. Likewise, she has made contact with laboratories, rehabilitation centres and similar bodies, in order to achieve beneficial agreements.
Oriana has participated in many of the CEM's diffusion activities, such as radio interviews in 1997 and 1998. She wrote media and TV shows in 1997, 1998 and 2001. She has personally attended many workshops, seminars and congresses in order to always be up to date with the latest advances and to get acquainted with alternative medicines. Many of these contacts have led to conferences and presentations at the CEM. She is thoroughly dedicated to the CEM's activities and has been the main supporter and organiser of the CEM's events since 1996.
Regarding her family, Oriana is really grateful to her sisters (Gladys, Sonia and Mireya), her nephews and particularly her son Osvaldo for their support. She acknowledges them for their patience, their positive attitude toward her; they always cheer her up and help her to participate in many social activities.
By 1996, the CEM was in a critical situation. The Board of Directors was made up of two people with MS and a neurologist. The CEM had lost the capacity to maintain any continuity or progress, mainly because of the MS that affected its members and the doctor's lack of time. At that point Oriana had only recently made contact with the Corporation. Her interest in helping and participating made her instantly stand out. Under these circumstances, Oriana joined as a director of the CEM, immediately assuming many tasks. Thanks to her altruistic will, energy, responsibility, disposition and joy, the corporation is an organization that is beginning to be nationally and internationally acknowledged.
In a developing country like Chile, there are not enough governmental resources and it is hugely difficult to get financing that will enable any activity. In such circumstances people like Oriana become engines capable of creating true virtuous circles; with their joy and optimism they make others work for the benefit of many. CEM is proud and thankful to be able to count on her, and feels this is a great opportunity to reward her for all her contributions. Likewise, CEM considers Oriana to be a great example of someone who uses her will and service for the benefit of everybody.
Oriana has had to take over her home's maintenance and the education of her son alone. She divorced when her son was just a child. After being diagnosed with MS, she had to leave her paid job as a secretary, and lived only on the money she receives from some small real estate inherited by her family.
Wolfensohn Award for International Person with MS
Oriana received a travel grant to allow her and a travelling escort to attend the MSIF Biennial Conference, 2001, held in Melbourne, Australia. All expenses of travel, accommodation, registration fees to the conference and any food, beverages, transport in Melbourne and so on were covered for Oriana and her companion.
Oriana was presented with a Certificate. She made a speech of thanks and also gave a short presentation about herself at the opening ceremony of the Conference.
