Alianza Latina WFSAD

The Alianza Latina WFSAD (the WFSAD Latin American Alliance of Family Associations) is a loose affiliation of self-help, support and advocacy groups working to support families of those with schizophrenia in Latin America (Mexico, Central and South America). The first international meeting convened by WFSAD in order to bring these groups together took place during the 2002 congress of the Latin American Psychiatric Association (Asociacion Psychiatria America Latina - APAL) in Guatemala City.

As a result of this meeting the group of family associations issued a declaration of intent, now known as the Guatemala Declaration and proposed meeting a second time for mutual education and leadership development.

A second meeting of an enlarged group of family associations took place the following year during the Regional Meeting of the World Psychiatric Association in Caracas. A report of this meeting appears below. Prior to the meeting WFSAD conducted a survey to determine the level of development and the key issues for each organization, so that progress may be measured as each priority issue is addressed.

The Alianza was very pleased by the warm welcome afforded to us by the organizers and the services extended to us during the meeting. The intent of the Guatemala Declaration was confirmed, and the organizations went away to form ideas as to how to implement the declaration.

We were very fortunate to have the sponsorship of Pfizer Neuroscience and the Pfizer Foundation respectively for the meetings in Guatemala and Caracas and AstraZeneca for funds to develop the benchmark survey.

In November 2004 a small number of Alianza Latina WFSAD members conducted a symposium on schizophrenia and had private meetings at the APAL meeting held in Punta del Este, Uruguay. For this meeting the host family organization was La Esperanza.

The Alianza Latina WFSAD continues to exchange news on a weekly if not daily basis. Support calls which come to the World Fellowship for Schizophrenia and Allied Disorders through its Spanish website are regularly referred to appropriate local organizations. A private web page is maintained for the use of the Alianza members who may post any information of international interest there.

An international Bulletin with news from the region is posted every three months on the private site.

Organizations taking part in the WFSAD Alianza Latina are:

  Cordoba ACAPEF
  Jujuy AJUPEF
  Mar Del Plata AMAPEF
  Mendoza AMFE

To reach any of these organizations, please contact the World Fellowship for Schizophrenia and Allied Disorders.



2nd Meeting of Latin American Family Organizations, October 2003

WFSAD Symposium and Workshops
at World Psychiatric Regional Congress, Caracas, Venezuela

October 1, 2:30-4:30 p.m., Salón Flamboyán

Symposium: Families, Consumers and Professionals Working Together

Chair and Facilitator: Dr. Itzhak Levav

Speakers: Dr. Edgardo Engelmann: Porqué y cómo tomar medicamentos aunque no sea lo normal

Prof. Julian Leff: Co-operation Not Conflict: The Strategy for Solving the Problems of Schizophrenia

Prof. Dale Johnson: Family Education or Behavioral Family Psychoeducation: Making a Choice

October 2, 09:00-10:30, Salón Ceiba

Workshop: How Professionals Can Benefit from Working with Families and Family Organizations - Panel/Audience Discussion

Chair and Facilitator: Dr. Itzhak Levav

A panel of guest speakers answered questions regarding family involvement in the care and treatment of schizophrenia.

Ms. Diane Froggatt, WFSAD Executive Director

Sr. Francisco Morata Andreo, President FEAFES Spain (Spanish family federation)

Sra. Damelis Salazar, CATESFAM President (family organization in Maracaibo)


The symposium was well attended. Dr. Itzhak Levav was an excellent chairman, taking great care to get the most out of both the sessions he chaired. There were ample questions about schizophrenia and its treatment and a positive response from the audience. The speeches of the three speakers were well received and will be available to WFSAD members and Caracas delegates upon request.

Morning Workshop
Diane Froggatt briefly outlined the work of the World Fellowship for Schizophrenia and Allied Disorders. Damelis Salazar introduced herself as one of the panelists and described the work of CATESFAM, whose mission was to be a centre of excellence allowing people with schizophrenia to work on their own recovery following the 10-step model applied by patient and family. Francisco Morata spoke of the work of the Spanish federation of mental health organizations, FEAFES.

This session was designed as an interactive workshop to discuss all areas related to schizophrenia. Questions ranged from how to persuade people to go for treatment, to the ethics of compulsory treatment. The problems of patients with schizophrenia living at home with their families and the need for respite for such families was particularly relevant in countries where there is no community housing for those with serious mental illness.

Dr. Juan Mas Vivanco, a Chilean psychiatrist, described a situation in Chile, which left patients "totally discarded" despite attempts at reform.

Damelis Salazar of CATESFAM, Maracaibo, Venezuela, during the schizophrenia symposium in Uruguay

Damelis Salazar of CATESFAM, Maracaibo, Venezuela, asks a question during the schizophrenia symposium. In the foreground are Sergio Ruffinelli and Ofelia Stajano of Esperanza, Montevideo, Uruguay.


Afternoon Closed Private Sessions
The closed sessions were designed as educational and informative workshops for family-leader-delegates. An important objective of these sessions was to re-affirm the goals of the Guatemala Declaration, dated July 13, 2002, written at the first meeting of the Alianza Latina WFSAD in Guatemala. People settled readily to this task. The small-group format proved to be an excellent way for delegates to get to know about each other's work, and to discuss the efficacy of the Guatemala Declaration.

The session re-affirmed that the ten issues in the Declaration were still significant to the lives of people with schizophrenia and their families. The new points raised enhanced, rather than changed, its intent. These will be formulated into an addendum to the Guatemala Declaration entitled the Caracas Addendum.

During the meeting each organization received a copy of the results of the WFSAD survey of Alianza Latina WFSAD members, conducted from July-September 2003. This document describes the activities, current priority issues, and obstacles of each organization. There was no formal discussion of this material but we were able to highlight several of the more interesting initiatives by asking delegates to give short presentations focusing on these. The document will serve as a benchmark for operationalizing the Guatemala Declaration in each country in the next year.

Joyce Dawson (Ypsilon, Surinam) spoke of the very rewarding experience of going into the schools and how the children became much more sympathetic once they had actually met people with schizophrenia and other serious mental disorders. They began by educating the teachers, first about Tourettes and autism and going on to the other disorders, such as schizophrenia. "Our children are the future. How they behave determines our society," she told the group. A patient accompanies the team. "This helps the children to realize that you can be normal from the outside but who knows what may have happened inside. Part of our teaching was to show children how to talk without causing wounds, and accept people as they are." Joyce's presentation was short but affecting.

Dr. Raimundo Muscellini talked about the clubhouse 'Casa Club,' that ACAPEF Argentina has set up to help improve the recovery of patients with schizophrenia and other serious mental illness. Cognitive psychotherapy and social skills training are given along with employment and recreational activities. Families were involved and became partners in treatment. We "don't leave them alone in the chaos," he explained. For the patients the main objective was social insertion, giving help to those who need it to live in the community. Hospitals were part of the past.

Francisco Morata, President of FEAFES, Spain, spoke about how to persuade the media not to sensationalize mental illness, in particular, schizophrenia, which is often portrayed in a devastating, stigmatizing way. We hope to put this talk on the website in both Spanish and English.

Pfizer Venezuela hosted a reception at a very nice restaurant. Thanks to Oswaldo Parilli of Pfizer and his colleagues for this truly lovely event.

Delegates listen to a speaker at the World Fellowship for Schizophrenia and Allied Disorder's Symposium in Caracas, Venezuela

Delegates listen attentively to a speaker during the private workshops.

Morning Workshop 3rd October

Prof. Julian Leff conducted an interactive two-hour workshop. Notes on his presentation are available to members upon request. One very interesting point he made was the new thinking about hallucinations and delusions that suggests that people with schizophrenia can be assisted to overcome them. The previous thinking was that delusions were beliefs that were "impervious to reasoned thought" and that families should not aggravate things by trying to change them.

Cecilia Villares (ABRE, Brazil) presented an informative slide show about her organization's experience with the WPA program "Open the Doors." This program is designed to fight stigma and discrimination against those with mental illness, at the local level. We hope to provide more detailed information about this shortly.


Private Workshops - 2nd October 2:00 - 4:00 p.m.
Benvenido - Welcome

Diane Froggatt

Interpreter: Gail Grossman, Chile

Karina Stone, WFSAD

De Guatemala a Hoy

Background on the Alianza Latina WFSAD

Martha Piatigorsky y Dale Johnson

La Declaracion de Guatemala

The Guatemala Declaration

30 minute Break-Out sessions

Delegates met in tables of 8 to discuss the Guatemala Declaration. Each table provided its input.

Los Medios de Comunicación

Reducing sensational journalism

Francisco Morata


2 October: 4:30 - 6 p.m.
From information from the questionnaire several topics were chosen for presentation during the next sessions
Escuelas/ Schools
Joyce Dawson, Ypsilon, Surinam
Clubhouse-ACAPEF Argentina
Dr. Raimundo Muscellini, ACAPEF, Argentina
Fondos/ Fundraising
Reducing Sensational Journalism
Francisco Morata, FEAFES, Spain



Morning 3rd October 9:00 - 12:00
9:00-11:00: Workshop
Prof. Julian Leff, UK
ABRE-Brazil-Cecilia Villares
Closing Remarks
Diane Froggatt, Dale Johnson

How our sessions were received
All the sessions were received positively. There was great appreciation for the printed materials provided and the subjects covered. The small-group sessions were a great success. Inevitably, a few people expressed disappointment that there was not more time or that there was a need to cover more topics.

There was an overall feeling of joy among our delegates at having a second meeting of Latin families. They have each contacted us since returning home. Both the World Fellowship for Schizophrenia and Allied Disorders and the Alianza Latina WFSAD are anxious to continue the relationships and to build the network in the hope of enabling advocacy for, and implementation of, better care for those who suffer from schizophrenia and other mental illness. The plan to meet again in one year (see below) provides an impetus for the Alliance to continue to improve the capacity of their organizations for self-help, support and advocacy.

Dr Edgardo Engelmann (Argentina), Prof. Dale Johnson (WFSAD President Elect), Prof. Julian Leff (UK) and Dr. Itzhak Levav (Israel) at the World Fellowship for Schizophrenia and Allied Disorder's Symposium in Caracas, Venezuela

Dr Edgardo Engelmann (Argentina), Prof. Dale Johnson (WFSAD President Elect), Prof. Julian Leff (UK) and Dr. Itzhak Levav (Israel) take a break between sessions.


Future Initiatives
After the final WFSAD session, a committee was formed to plan for another meeting of the Alianza Latina WFSAD during the APAL meeting in Punta del Este, Uruguay, November 17-20, 2004. The committee is composed of Sergio Ruffinelli Villaamil (Esperanza, Uruguay), Ofelia Stajano (Esperanza Uruguay) Elena Saban (Alamo, Peru), Martha Piatigorsky (WFSAD V-P, Argentina) and Diane Froggatt. A planning agenda was made and work will begin in November 2003. Members of the Alianza will each try to raise their own funding for this initiative. We informed Dr. Edgard Belfort (Uruguay) of our intention to hold workshops at APAL next year and he offered to help us in any way we might suggest. We are now urging the medical advisor psychiatrists in Latin America, who support our work and are part of our network, to apply to speak on family work at this congress as soon as APAL is accepting abstracts.

We owe our sincere thanks to the Pfizer Foundation for sponsoring this event under their program "Strengthening Patient Advocacy Around the World" and to Pfizer Venezuela and their representative Osualdo Parilli and his team for their attention to our requirements.

Dr. Itzhak Levav was a great support as chairman of two of the sessions. His eloquence, sensitivity and approachability made the sessions particularly special. He is a well-loved figure in Latin America as a former executive of the Pan American Health Organization.

He is now active in the WHO initiative to bring the private sector to bear on raising the profile of mental illness: The Global Council for Mental Health. The World Fellowship for Schizophrenia and Allied Disorders is part of one of the preliminary working groups in this initiative.

We would like to thank Dr. Edgard Belfort, the chair of the WPA organizing committee, for his kind attention to all the WFSAD delegates. Jose Manuel Juanatey, the staff member with whom Karina Stone (project coordinator) dealt throughout the preparations and during the meeting, was friendly, helpful and extremely efficient in solving any problems that arose.

Gail Grossman, a professional interpreter, did an excellent job of consecutive translation. We thank her for her agile mind, slipping in and out of English and Spanish so easily that the information was imparted with minimal delay.

Thanks also go to journalist Mariela Nunez of El Nacional, whose half-page article with photograph in the newspaper helped to publicize the family movement for mental illness in Venezuela.