When the words were lost

And suddenly the words were lost

Only forms and things prevailed

But I had forgotten what to call them.

A lightning had erased from my memory

The language inherited from past centuries

And the one I daily discovered.

I had to reinvent the world around me

Because that other universe existed only in the word.

And only then I knew that silence is a mere pause

That separates the being and the not being from the existence

Because to discover beauty was no longer important

Since I could not tell about it with words

And only then I knew that without words, feelings

Are deaf and it is useless to appeal to them

That without words they disappear

That the keenest intelligence is blocked.

Because the purest, noblest feeling

Some phrases by persons with aphasia

  • "It is terrible, one cannot say what one wants...People don’t understand you, very few listen to you." (María del Carmen)
  • "I don’t like it because I can never talk to you about anything." (Ricardo)
  • "I feel that I went away...that I don’t know...that I don’t know" (Zulma)
  • "Silence." (Darío)
  • "Aphasia you, I. The others not." (Blanca)
  • "That was terrible, too terrible." (Erik)
  • "I couldn’t talk. I was paralyzed and I had the fantastic sensation of having been wrapped in a suitcase that was adapted to my body. I was in my agony, in my desperation." (Hamilton)
  • "The most painful, most distressing manifestation was that I felt my face to be fenced in, walled like in a tomb." (Dr. Saloz)
  • "Torn apart, torn apart.…" (Valery)
  • "The loss of the word deprived me of my own esteem." (Helen)
  • "I.... mute." (Soledad)
  • "My mind worked at a 100% ...ehem...always. It was the word that I missed." (Erika)
  • "Everything had been erased from my mind." (Juan)
  • "It was as if I had died." (Luis Ignacio)
  • "I was a prisoner inside myself." (Bruno)
  • "I was totally absent." (Alejandra)
  • "Where am I? What is happening to me?" (Cristóbal)
  • "I didn’t notice, I thought I was talking right." (Laura)
  • "I was blocked over a word, the language had disappeared completely." (Pía)
  • "I couldn’t say what was not well." (Martín)
  • "I felt defenseless, I couldn’t recognize the signs...and...write. I could look but not read. My friends brought me magazines, but I couldn´t read them." (Franco)
  • "I thought it would last one week, two weeks..." (María Emilia)
  • "I believed they thought I had gone mad." (Antonio)

What is Aphasia?

Aphasia is an acquired language disorder, caused by brain damage. It affects a person’s ability to speak and also their social, professional and emotional life.

From one moment to the next, abruptly, people with aphasia people begin to suffer significant difficulties to speak, understand the language, read and even write. They can no longer do what they used to do, the family suffers the crisis, friends stay away because they do not know how to treat them and they isolate themselves. The damage can also provoke hemiplegia, memory disorders, lack of attention, difficulties in handling money, etc.

People of all ages, social standings and gender can suffer aphasia. The most frequent causes are the cerebral vascular accident and the cranium traumatisms, but tumors, infections and degenerative diseases can also lead to aphasia.

Mission and Objectives

Our Mission

We were born with the mission of assisting and giving support to the person with aphasia and their environment. We propose to promote the prevention and awareness of the community so that, with proper knowledge and solidarity it can help people with aphasia to attain a more effective performance and better conditions for reinsertion.

Our attempt is to train professionals, volunteers and care-givers so that they can help the person with aphasia improve their quality of life and preserve it over the years.

Our objectives

Our main objective is to attain the social inclusion and work insertion of the people with aphasia so that they can achieve greater autonomy and better quality of life.

We define our objectives as psycho social. This concept of "psycho social life" is seen as the emotional result (happiness, self-esteem, etc.), that is attained through the contact with fellow human beings. It is an accepted fact that the emotional state has a significant impact on the motivation, cognition and processing of the language.

Who we are?

It was Mr. Rudi Schwarz who created this Foundation to which he gave his wife’s name out of gratitude for the correct therapeutic treatment that allowed Charlotte to enjoy her last years despite her aphasia.

The project this institution carries out started in 1989. From the beginning we conceived care-giving in an integral way, taking into account the person as a whole, with their failings, emotional states, tastes and interests together with their environment.

We created the workshops with the aim of stimulating the healthy right cerebral hemisphere, augment the self-esteem and facilitate social inclusion.

The project is completed with campaigns of awareness (meetings, broadcasting in the mass media, videos), so that more and more people learn what aphasia is and understand the world of those who suffer it, and of prevention, so that they learn to prevent it by controlling the risk factors.

After twelve years and thanks to the financial help granted by the Ministry of Development and Environment through the Check Tax Law No. 24,452, the purchase of a house, its refurbishing and provision of the necessary equipment were completed for the creation of the first Day Center for Aphasics, declared of interest by the Government of the Autonomous City of Buenos Aires.

In 2004, in order to reach the goal of favoring work reinsertion, the "Left Hand" Leather and Sewing Workshop was created. At present, we have added bijouterie, decorative inlays, fabric printing and technical aids thanks to the collaboration of the National Ministry of Labor.

The staff includes neurologists, linguists, neurolinguists, neuropsychologists, speech therapists, neuropsychopedagogists, kinesiologists kinesitherapists, occupational therapists, psychologists, social workers, neuromusicologists, professionals of several disciplines and volunteers.

Our benefits

In total accordance with our institutional purposes and the agreements signed with the official organisms that financed the purchase of the property for the launching of the Day Center, an anual scholarship quota is granted to people with aphasia who cannot afford the cost of treatment so that they can have access to our services and activities.

Our activities

To find an answer to the complexity presented by people with aphasia, their environment and their community, we propose a multiplicity of actions, such as traditional and innovative care- giving methods which allow us to fulfill our mission and objectives.

Interdisciplinary evaluation

In neurology, linguistics, neuropsychology, occupational therapy.

Day Hospital (since 1982) interrupted and which will be resumed this year (2014)

The integral interdisciplinary module for persons in the phase of recuperation, with daily hospitalization, permits people with aphasia to go on living with their family without isolating themselves. It consists of stimulation during individual sessions in combination with group workshops.

Day Center

The Module of integral interdisciplinary care-giving for persons in the chronic or multiple disability phases aims fundamentally at learning behaviors which will lead to a greater autonomy and better quality of life with special emphasis on the social area.

It consists of different workshops (group activities): reading-writing, conversation, acting, sculpturing, music, healthy cooking, memory exercises, gymnastics, tangotherapy, neuromagics, yoga, puppets and masks, photography, painting, talking, computing, psychotherapy, drawing and communication, combined with several individual activities (speech therapy, psychotherapy, neuropsychology, etc.) for the treatment of specific failures.

Special Programs

“Orior”
Support during the first phase of spontaneous recovery.

“Libero”
Adaptation of the Orior Program to the posterior phases after aphasia occurred. It offers alternative models for the traditional treatments.

“Diagnosis-prognosis”
Intensive method for defining the nature of the failings in a multi-professional evaluation, diagramming a treatment and putting it into practice in order to determine the reaction of the patient. It is ideal for persons who live in distant regions where there are no specialized centers. It offers a therapeutic plan, with proved techniques and training during the last week for the professional(s) who will continue the treatment where the patient resides.

Outings
The aims of these outings are recreational and cultural, but also include the practice of autonomous and social conducts stimulated in the social programs and, at the same time, the assimilation of material (subjects, experiences) to work on in the institution.

Orientation interviews During the first meeting with the family member in charge, a close friend or the autonomous person, information is given about the pathology, the way to treat a person with aphasia, the possibilities of health care, the benefits granted by law.

A contact is established to ensure that, whether the person who asked for the interview decides to contract a service or not, he/she has good access to information, which is free of charge.

Multi-family meetings
Every three months, family members and close friends of persons with aphasia are convened to exchange experiences and seek advice. The group is chaired by the coordinator of the psychology area of the institution.

"Left Hand” workshop
Created in 2002, it is aimed at giving back to people with aphasia their working status. It owes its name to the prevalent hand used in cases of right hemiplegia. Each participant manufactures unique fashion goods, designed and developed by him. It has been declared of interest by the National Senate (May 2004), with the support of the Canadian Fund for Local Initiatives, the Government of the Autonomous City of Buenos Aires and the Ministry of Labor.

School for people with aphasia.
The project is based on the natural neuronal plasticity of human beings. It is aimed at people who have suffered cerebral damage and, consequently, some cognitive disorders, without distinction of age or gender. The program includes subjects like Illustrated History of the Combined Arts, History of the People and their Habits, Ecology, History of the Religions and Biology. The teachers in charge of these subjects are specialists; the wives of ambassadors accredited in Argentina work as teachers as well. All the participants are evaluated with 5 questions before and after each class in order to check quantity and quality of the acquired knowledge.

Our Services

  • We organize meetings, training courses and awareness talk trough Fundafasia Docencia.
  • We participated in talks, conferences and round tables.
  • We present papers in national and international congresses.
  • Every year, during the International Aphasia Awareness Month, we carry out:

    Collective exhibitions of paintings and sculptures made in our workshops in Manzana de las Luces, the Honorable House of Representatives of the National Government, Jardín Japonés, Suzuki Foundation, etc.

    In 2002 and 2009, we organized two Integrated Exhibitions of Paintings and Sculptures of Persons with Aphasia and very Important Contemporary Argentine Painters and Foreign (N.Iniesta, L. Noé, L. Freixas, L. Presas, O. Monzo, V. Campanella, R. Carpani, L. Ferrari, J.Moreaux, E. Raasmusen, among others). The one in 2002 presented works of people with aphasia from Argentina and different part of the world (Spain, France, England, Belgium, Japan, USA, Colombia, Mexico, etc.).

Academic and teaching activities

Fundafasia Docencia offers several educational activities:

Argentine Conferences of Aphasiology – biannual –
They are organized together with academic institutions; Centro de Educación Médica e Investigaciones Clínicas “Norberto Quirno” (Cemic), (Center for Medical Education and Clinical Resarch Cemic); Instituto Universitario, Escuela de Medicina, Maestría de Neuropsicología del Hospital Italiano (University Institute School of Medicine Master in Neuropsychology of the Italian Hospital) Universidad del Museo Social Argentino, etc. (University of the Argentine Social Museum).

Internships for professionals
Training Program in Aphasia aimed at speech therapists, linguists, neurolinguistics, neuropshychologists, pshycho-pedagogues, music therapist (neuromusicologists) , etc. from Argentina and other countries.

Training in Neurolinguistics
Special programs designed for linguists and speech therapists.

Psycho-education Courses
We organize courses, talks and workshops in our institution and outside aimed at relatives, friends, housekeepers, caregivers, geriatric assistants, nurses, etc.

We offer courses of Therapeutic Companions and Aphasia and Therapeutic Companions and Cognitive Deterioration.

Basic Module
It is aimed at professionals, teachers, administrative clerks and /or volunteers who want to join our working team, no matter their profession or previous activity. It is also aimed at caregivers and relatives.

Agreements at educational level

  • University of Buenos Aires (UBA)
  • Maimónides University)
  • University of the Museo Social Argentino UMSA)
  • University of Salvador USAL)
  • National Technological University (UTN), Buenos Aires)
  • University of Business and Social Studies (UCES) )
  • University of Morón)
  • Italian Hospital. University Institute, School of Medicine. Master in Neuropsychology)
  • Hospital de Clínicas through the hospital network of the University of Buenos Aires

Clinical Research

  • Technological development

    Phonological discrimination: “How does it sound?”, an application for Android developed by students of the Technological University (Buenos Aires).

    Augmentative communication 1: “Communicator for People with Acquired Language Disorders”, developed by Mana Desrrollo, supported by National Technological University (UTN), Buenos Aires, granted by the National Ministry of Science, Technology and Productive Innovation (Social Actors Program, PROCODAS).

    Augmentative communication 2. “Conversator for People with Acquired Language Disorders”, developed by students of the School of Engineering, University of Buenos Aires (DANE Project).

  • Neuro stimulation

    School for People with Aphasia. Fundafasia.

  • Getting back to driving (or not) in people who have suffered a stroke (aphasia).
  • Awareness

    Getting on with the International Aphasia Awareness Program together with Phd. Dr. Chris Code.

Awareness Activities

FUNDAFASIA is permanently working in the community trying to create awareness about what aphasia is, how to prevent it and how to include people with aphasia.

  • Aphasia Awareness Campaigns. Yearly, in June and October. Talks, lectures and publications in the media.
  • Cooperation with the University of Exeter, UK. Phd. Dr. Chris Code. We have been presenting our findings in several international aphasia meetings. Our last presentation took place in the 14th International Science of Aphasia Conference, which took place in Brussels, Belgium on September 22, 2013. www.apahasiacorner.com/aphasia-public-awareness.
  • TV Special
    • “Aphasia” - “The aphasics”, in Big Medical Issues, Favaloro Foundation (1987)
    • “Speechless”, in De Fulanas y Menganas (1988).
  • Media. Permanent presence in television programs, on the radio, interviews in the written press and publications in the third sector.
  • Advocacy. Work with government and non-governmental organizations to influence public policies in the area.

National and International organizations

  • Member of the International Association of Aphasia.
  • Advisory Board of Aphasia United.
  • Member of the Advisory Committee of the Disability Commission of the Foreign Office.
  • Member of the Disability Observatory in the “communications” working group of the National Advisory Commission for the Integration of People with Disabilities (CONADIS) in representation of the Advisory Committee of the Disability Commission of the Foreign Office.
  • Representative organization for all Non-Profit Disabilities Organizations in the Autonomous City of Buenos Aires before the Federal Council (2010/13).
  • Member of the Health Board of the Social Sector Forum.
  • Member of the Federation of Foundations (Fedefa).
  • Member of the Special Necessities Net ABC of the Management and Participation Center Nº 6 of the Autonomous City of Buenos Aires.
  • Member of the Advisory Council of the Commission for the Full Participation and Inclusion of People with Disabilities (COPIDIS) in the Autonomous City of Buenos Aires.
  • Member of the Council for Strategic Planning of the Autonomous City of Buenos Aires (CODE) – Social Dimension, Health Commission – members since 2010.

Government of the Autonomous City of Buenos Aires. Fundafasia has been collaborating with the Government of the City of Buenos Aires for many years and is still doing so through several projects won in public tenders.

  • Ministry of Human and Social Rights, General Direction of Promotion of Volunteering and Civil Society.
  • Ministry of Culture.
  • Ministry of Social Development
    Former Secretary of Social Promotion
    Former Direction of Disability
    Institutions Support Program (2000/7) .
  • General Direction for the Strengthening of the Civil Society
  • General Direction of Social Economics
    Units of Social Development Program (2005/8)
  • Vice- Chief of Government of the Government of the Cityy
  • Ciudad Bank Foundationn
  • Registered in:
    ROAC Register of Community Action Organizations (CABA)
    CIOBA Information Center for organizations in the City of Buenos Aires

International Organisms

  • Canadian Embassy
  • Association of Spouses of Diplomats accredited in Argentina (ADEA)
  • British Council
  • Lousiana University
  • University of Exeter

National Organisms

  • Ministry of Social Development
    Checks law: Creation of the Day Center
    Coordination of Direct Assistance to Institutions, depending from the Secretary of Management. Institutional Articulation (COORDAD).
    Registered in the National Community Service Organizations Center.
  • Ministry of Labor.
  • Ministry of Science, Technology and Productive.

The members of the Board created the:

Honorary Advisory Committee. Group of people with aphasia who take or took part in the activities offered by Fundafasia, their friends and relatives. Their role is to:

  • provide ideas and collaborate in activities, projects and actions that can influence public policies;
  • give information about the pathology to government agencies, where aphasia is not represented; ;
  • give information about the pathology to people in non official circles aiming at raising the community’s awareness of the persons with aphasia reality.

Honorary Support Commission. All the people who want to participate in The Honorary Support Commission work with the aim of contributing to achieving the objectives of the foundation, helping develop projects and programs and creating fundraising activities.

The following people and institutions collaborate with Fundafasia

Fundafasia has a significant amount of Benefactors and Volunteers, Argentinian and from abroad and foreign institutions such as the Canadian Embassy, the Association of Spouses of Diplomats Accredited in Argentina (ADEA), the British Council, the University of Louisiana (USA), The University of Exeter (UK), etc.

Argentine Companies

Agustín y Enrique Rocca Foundation, Noble Foundation, Banco Ciudad Foundation, La Nación Foundation, Banco Galicia Foundation, Bunge y Born Foundation, Flecha Bus Foundation, Clarín Newspaper, Alba, Cervecería y Maltería Quilmes, Saint Thomas Country Club, Ferrum SA, Terrazas al Mar SA, Farmacias RP, Hotel Grand King, Melitax SRL Radio Taxi, Taupo SA, Tramando, Control Group SRL, AZ Editora, Petrobras, Banco de China, Banco Galicia, Paramedic, Gato Dumas, Transportadora de Gas del Norte (TGN), Transportadora de Gas del Sur (TGS), Montpellier Laboratories, Roemmers Laboratories, Peisa, Paramedic, etc.