Dbi review issue Number 45 • January – June 2010

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The 10th International CHARGE Syndrome
Conference for Families and Professionals

[Friday – Sunday, July 29-31, 2011]

and 2nd Professional Day [Thursday, July 28, 2011] at the Rosen Shingle Creek Resort, Orlando, FL

Call for platform presentations, poster presentations, exhibits, demonstrations, and on-site research projects

Deadline for Submission: November 1, 2010

Marilyn Ogan and Janet Murray 2011 Program co-chairs

The CHARGE Syndrome Foundation, Inc. 141 Middle Neck Rd. Sands Point, NY 11050

If you have questions about the program, email them to: marilyn@chargesyndrome.org or janet@chargesyndrome.org

B in CHARGE conference

8–10 October, 2010

Fremantle, Western Australia

Anazing CHARGE children

Shining brighter as they grow


8–10 October, 2010

Esplanade Hotel Fremantle WA


SOCIEVEN, Deafblind of Venezuela: 15 Years

January 20, 2010 marked our 15th anniversary as an organization. This is a perfect moment to make a retrospective of our achievements and evolution as an organization.

SOCIEVEN, Deafblind of Venezuela, is a non-profit association founded in 1995 by María Luz Neri de Troconis. As a member of Deafblind International (Dbl), SOCIEVEN aims to improve communication skills and quality of life for deafblind people and their families.

In 1995, the disability deafblindness was generally unknown throughout the country. Through great efforts we have reversed this lack of awareness and have succeeded to develop an effective support program. We are pleased to say that we have developed an organization that now manages four important programs for deafblind people in Venezuela. They include: the national network and community program; training and consultancy services for parents, professionals and institutions; awareness of deafblindness and usher syndrome and the Five Senses in Action Program.

Deafblindness has grown to be better known, in a positive way, in Venezuela. People who are deafblind are now being understood as people who, even though they do not see or hear (although some have residual vision and hearing), have the possibility of communicating through different systems. Even more important, these disabled people now have a greater potential to become better integrated in society.

During the last fifteen years, SOCIEVEN has registered numerous achievements. It has identified 678 people of all ages, with acquired and congenital deafblindness. Some 465 of these individuals are supported by Socieven in various ways. The organization has trained 3,320 professionals, parents and students belonging to special institutions operated by the Department of Education in 16 states. SOCIEVEN’s goal for 2015 is to identify and ensure that appropriate services are available for the estimated 4,000 people who are believed to be deafblind in Venezuela.

It is important to highlight that our collaborators are an essential part of SOCIEVEN’S goals that strive towards ensuring that people who are deafblind in Venezuela have a better quality of life. We now have a group of almost 1,000 ambassadors (artists, athletes, social communicators, businessmen, photographers, etc); intervenors for deafblind people; professional volunteers; representatives from partner companies, institutions, state agencies and the media who have supported us from the first moment that we decided to make the public aware of deafblindness.

SOCIEVEN is going to celebrate its anniversary throughout the entire year 2010 through a number of wonderful initiatives.

The organization started off 2010 with the publication of the “Guide to Support Deafblindness” with the assistance of the Polar Foundation. This guide is the first Venezuelan publication designed to inform and provide simple tools for family members and professionals working with the deafblind population. The guide is available on Socieven’s website in Spanish.

SOCIEVEN will initiate the Masters Degree ‘Specialization in Deafblindness and Multiple Disabilities in Venezuela’ at the Liberador Pedagogical Experimental University. This course is supported by Perkins International, Christoffel Blindenmission (CBM) and International Council for Education of People with Visual Impairment (ICEVI).

SOCIEVEN also created the Genetic Laboratory for people with Usher Syndrome at the University of Orient Venezuela located in the state of Nueva Esparta. This was achieved thanks to the Organic Law of Science, Technology and Innovation. This program is also supported by the Real Estate Securities Fund of Venezuela and the OFL Corporation.

Our calendar ‘Five Senses in Action 2010’ (created by Tactus Production) with the actress Elba Escobar and a congenital deafblind child, Yuralbis Contreras, on the cover, continues to raise awareness about deafblindness. At the same time, this calendar promotes the teaching of braille, manual alphabet and fingerspelling (dactylologic) as communication options for deafblind individuals.

We extend thanks to Tactus Pro and Infocus Production for a special gift helping us to celebrate 15 years. They have produced a beautiful documentary that explains our work through images and testimonies. Check us out through the following link: http://www.youtube.com/watch?v=j4DjfCP2vPo

We have to extend a special thanks to the participation of Anabella Troconis during these past 5 years. Actress, producer and leader of the Deafblind Ambassadors, and creator of the “Five Senses in Action” program, Anabella’s philosophy is: “the vision and hearing of the artist; the touch and sense of smell of deafblind people.”

We begin the year of our anniversary full of joy and strength; beginning the year committed to the mission of improving the communication abilities and quality of life for people in Venezuela who are deafblind. This report is a great opportunity to express our gratitude to all the staff who has been a part of SOCIEVEN; to the national and international institutions (Perkins International, CBM, ICEVI, Sense, ONCE, Birmingham University, CDBA, ULAC and others) that have supported us through all these years; to the professionals who we work closely with in our programs; to our many volunteers and collaborators; to the Latin-American region, and finally to our clients, this special population of people, and their families, that we have assisted and will continue to do so.
Maria Luz Neri de Troconis




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