Fundación Querer

Want to educate

Want to teach

Want to research

Want to help

Want to change

Want to know

 

We specialize in research and education of children diagnosed with cognitive aphasia caused by an array of rare diseases.

In Spanish, querer means: to will, want, wish, desire, like, love

Get to know more about us

Querer Foundation

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Fundación Querer is a nonprofit organization born to bring together professionals from the scientific, academic and medical communities specialized in the human brain and interested in using their knowledge to improve the quality of life, the upbringing and the learning system of children diagnosed with a severe language disorder or a rare language-related developmental disorder.

We want to be a center of reference for families, brain researches, neurologists, pediatric neurosurgeons, and the Special Education academic community. To this end, Fundación Querer promotes knowledge sharing and the use of new therapies. It also supports the development of children whose diagnose hinders their learning capacities.

We are working on our first project: the creation of “El Colegio de Celia y Pepe” in Madrid (Spain), which is a Special Education school where scientific, neurologic, and academic communities help these children to learn better. In this center, new technologies applied to Special Education will have a relevant role.

Families with children who suffer from rare developmental disorders, especially the ones that affect language, encounter all kinds of problems, of which obtaining an accurate diagnosis is normally the first one.

Diseases causing severe language disorders such as the following are frequently misdiagnosed for being rare:

Benign rolandic epilepsy (bening epilepsy with centrotemporal spikes )
Childhood Absence Epilepsy
Lennox-Gastaut Syndrome (LGS)
West Syndrome
Juvenile Myoclonic Epilepsy
Dravet Syndrome
Angelman Syndrome
Agenesis of Corpus Callosum
Landau-Kleffner Syndrome
Rett Syndrome
Ring Chromosome 20 Syndrome
Behaviour disorders with language problems and language disorders in general

Being families´and pediatricians´lack of means to correctly diagnose children the main impediment to obtain a suitable medical treatment, inadequate education is the next stumbling block that families encounter.

This is due to the fact that the current educational system in Spaiin rarely provides the necessary learning tools and environment to teach children suffereing from severe language disorders caused by rare diseases.

Fundación Querer is a private initiative that comes into existence to help families cope with this problems and solve them. To this end, it has kick-started its first project: “El Cole de Celia y Pepe”.

Fundación Querer aims to put together medical, technological, pharmacological and educational research to better serve these children´s growth. It aims to raise these these children in a comprehensive way adapted to their needs instead of trying to adapt them to the general education system that currently exists, which has no use for them.

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El Cole de Celia y Pepe
(The school of Celia and Pepe)

The goal of “El Cole de Celia y Pepe” is to provide individualized quality education to children with severe language disorders.

To this end, “El Cole de Celia y Pepe” will offer a holistic approach and promote the creation of multidisciplinary teams that will work on the diagnose and research of language-related disorders from medical, pharmacological, neurological and educational perspectives.

We want to provide a highly specialized environment that offers not only individualized logotherapy and physiotherapy, but also a personalized curricula to help children learn to read and communicate.

To give these children the best possible education, we will train Special Education teachers to handle these disorders in a school that will count with a team of neurologists and specialized therapists. Our specialists will work closely with researchers interested in rare diseases, education and technology to focus on children with language and developmental problems.

We are proud of having an extraordinary collaboration with the Nisa Foundation, which has created the first medical unit specialized in detecting, treating, and monitoring rare diseases associated with difficult to treat epilepsies.

The following medical team is in charge of the services from the Nisa Foundation:

Pediatrics and Intensive Care Unit Medical Directors:
Dra Maria Jesús Pascual Marcos
Dr Rafael Montero Reguera

Servicio de Neurología

Neurologists:
Dra Maria del Pilar Tirado Requero
Dra María Alba Jimenez

Neuropsychologist:
Dra Lilia Hernandez del Castillo

Neurophysiologist:
Dr Jose Daniel Zarza Luciañez.

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Fundación Hospitales Nisa

The Project:

The Service of Pediatric Neurology is part of the Pediatrics Service of the Nisa Pardo Hospital in Aravarca, Madrid.

This Hospital is staffed by professionals specialized in Neurology and Neuropsychology who diagnose and integrally treat all illnesses in the nervous system. We also care for patients on an outpatient basis or external consultations and have the technical and human resources to provide the
hospitalization of the patient, his diagnose and treatment.

This service also counts with a specialized unit on learning difficulties.

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Areas:

– Pediatrics
– Pediatric Neurology
– Pediatric Neuropsychology

 

Areas of expertise in Pediatric Neurology:

– Attention Deficit Hyperactivity Disorder (ADHD)
– Learning Disorders
– Pervasive Developmental Disorders (PDD) or from the autism spectrum (ASD)
– Psychomotor Retardation and Intellectual Disability
– Assessment of the child’s psychomotor development
– Infantile headaches
– Sleeping disorders
– Infantile Epilepsy (epilepsy syndromes, symptomatic epilepsy and cryptogenics)
– Convulsive febrile crises
– Infantile cerebral palsy and its complications
– Neurocutaneous syndromes
– Chromosomal and metabolic disorders with neurological repercussions
– Neuromuscular diseases
– Movement disorders
– Peripheral nervous system pathology
– Neurological complications after nervous system pathologies (infectious, autoimmune, cranialencephalitic traumas…)
– Neurological evaluation of newborn patients with perinatal diseases (prematurity, hypoxic-ischaemic encephalopathy, genetic disorders or metabolic congenital errors, vascular disease…)

Areas of expertise in Pediatric Neurology:

We focus our attention on children and teenagers from 0 to 16 years of age and treat:

– Attention Deficit Hyperactivity Disorder (ADHD)
– Learning disorders: academic failure, learning difficulties, writing disorders, calculation disorders, non-verbal learning disorders.
– Language and/or speech disorder: Speech and/or verbal comprehension disorders
– Behavioral problems
– Pervasive Developmental Disorders (PDD)
– Nervous system developmental disorders
– Intellectual Disability and Psychomotor Retardation
– Deficiencies in premature infants or infants born underweight
– Cognitive and emotional deficiencies resulting from brain damage: cerebral palsy, infant epilepsy, cranialencephalitic traumas, strokes,etc.
– Cognitive rehabilitation: executive attention and functioning, memory, agnosia, apraxia, etc.
– Sleeping disorders
– Emotional disorders. (Anxiety, depression)
– Somatic expression development disorder (functional speech disorders, eating disorders, breathing disorders, disorders in the
sleep-wake cycle, bladder control disorders, etc.)
– Specialist units
– Learning disorders unit

At the Service of Pediatric Neurology at the Nisa Pardo Hospital in Aravaca (Madrid, Spain) we have a unit specialized in learning disorders where we offer the evaluation, diagnostic, and follow-up for children and teenagers with learning difficulties.
This unit mainly focuses on medical assistance, teaching and research.

Our unit works hand in hand with professionals and counselors from every child’s school to guarantee the best intervention and follow-up in every case.

 

Learning disorders: definition and subtypes:

Learning difficulties is a general term that refers to a group of problems under the name of: Schooling Problems (SP), Poor School
Performance (PSP), Specific Learning Difficulties (SLD), Attention Deficit Hyperactivity Disorder (ADHD) and Severe Intellectual Disability (SID).

These disorders can manifest themselves as learning difficulties – very significant at times- and difficulties in adapting to school. Learning difficulties may occur throughout life, but tend to happen before puberty, during intentional teaching and learning educational processes.
Through these processes the child should achieving successful learning when not disrupted by learning difficulties.

Some of these difficulties (such as ADHD, SID and SLD) are intrinsic to the child and are mainly the result of a neurological malfunction that causes delays in the development of psychological functions needed for learning (such as attention, work memory, learning strategy development, etc.).

Others (such as SP and PSP) can be extrinsic to the child and are therefor caused by social-educational or instructional factors (such as inadequate educational family patterns, inappropiate instruction-giving, motivational deficit, etc.) that interfere with the necessary education of the child to the demands of the learning and teaching processes.

Subtypes of difficulties in learning:

We can distinguish 5 types or groups that will be categorized from least to greatest in severity.

Type I: School problems: These problems are considered mild, they do not affect the child strongly, and they are reversible. Children suffering from them tend to show unspecific learning difficulties, that is, they are linked to specific content and subjects, which can vary from one child to the other and do not affect all school learning.

Type II: Poor performance in school: First of all, the causes are external to the child, even if they tend to combine with personal characteristics of the child that increase his or her impotence. They are medium problems and need individualized attention (psycholinguistic problems, motivation, metacognition). The child can recover his abilities if treated adequately.

Type III: Specific Learning Difficulties (SLD): The original cause is independent from the conditions of the environment, but their development and the importance they receive are strictly linked to educational factors. The SLDs are considered of mid-high severity, given that children do not improve spontaneously (only through specialized intervention) and require long-term attention.

SLD is a specific term that refers to a group of disorders that manifest as specific difficulties in acquiring the necessary abilities for reading, writing, calculating, and mathematical reasoning (and other tasks in which the affected psychological functions are involved). Though these disorders are intrinsic to the child, he will show a medium IQ due to a presumable neurological alteration or malfunction that causes delays in the psychological functions (perceptive processes and psycholinguistic, work-memory, learning
strategies and metacognition) directly involved in learning.

Type IV: Attention Deficit Hyperactivity Disorder (ADHD): This is a disorder that results from severe personal factors that are frequently combined with inadequate responses from the environment. ADHD refers to a group of schooling disorders that manifest as severe difficulties for learning, family adaptation, schooling and social environment.

It is intrinsic to the person that suffers from it and it is the result of a neuropsychological alteration that causes malfunctions in the mechanisms of executive behavior management. These malfunctions directly affect the psychological processes involved in teaching and learning duties and school adaptation such as sustained attention, work memory, self- regulation of motivation and affection, internalization of language, and analysis and synthesis processes.

Type V: Severe Intellectual Disability (SID): Is a severe developmental delay that highly affects the child´s psychological processes and functions, which are fundamental for learning and adaptation. SID is a chronic disorder and even though you can achieve noticeable improvements through environmental intervention and stimulation, the problem will not disappear entirely.

These disorders are intrinsic to the child and they are possibly the result of an alteration or neurological malfunction that causes delays and alterations in the development of psychological functions and a low IQ (reasoning, attention, work memory, development and application of learning strategies, metacognition), which are directly involved in learning and adapting to the environment.

Children with learning difficulties constitute a larger and faster growing group among those which require special needs in school. General estimations point out that the incidence in learning difficulties fluctuates from 5% to 15% among school students.

 

We offer:

•Evaluation and diagnosis unit.
The advantage of guaranteeing an evaluation and diagnosis by the hand of a staff formed by:
1. Pediatricians
2. Pediatric neuropsychologists
3. Pediatric neurologists
• Treatment
• Clinical follow-up
The team offers a complete clinical follow-up by keeping a direct contact with school professionals and through a coordinated work between the pediatric, neuropsychology and neurology teams.
• School for parents
• Workshops for children and teenagers
• One-day training sessions
• Research

 

The Team:

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Dr. Pilar Tirado M.D.
Child Neurologist

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Dr. Daniel Zarza M.D.
Neurophysiologist

donate-EN

We need your collaboration

To kick-start and accomplish our mission and our project “El Cole de Celia y Pepe”.

For quick, secure and easy donations, we accept Paypal Payments and major credit and debit cards (Visa, Mastercard, American Express).

 

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We also accept bank transfers:
IBAN: ES79 2100 2338 9502 0033 7897

For international transfers:
BIC/SWIFT: CAIXESBBXXX

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We are looking for:

Professionals open to continuous learning and to work with innovative therapies and new technologies. They must be good team members and willing to work enthusiastically to discover the children´s abilities

  • Special Education teachers
  • Language specialists, including neurologists
  • Physiotherapists (mobility, balance, etc.)

If interested, please send us your resume and a cover letter saying why you like this project and how you think you can contribute to it.

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Mothers and fathers of children with severe language disorders, physicians, teachers, neurologists and everyone interested in this project can contact us by email at info@quererfundacion.com

This is the provisional web of Fundación Querer in English.

For further readings about epilepsy and other rare diseases, please visit the website of our official partner in USA: Epilepsy Foundation

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www.epilepsy.com

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