- established November 07, 2002
- registered at the District Court of Bremen on December 17, 2002
- recognized as a charitable organisation by the tax authorities of the Federal State of Bremen on February 06, 2003
The foundation of this charity has created the basis for a forum providing parents of children and adolescents with GLUT1 deficiency syndrome, physicians, dieticians as well as the general public with information on this metabolic disease and the only effective treatment available - the ketogenic diet.
Our charity aims to increase the public awareness of this disease by providing comprehensive information on this treatable epileptic encephalopathy. We also want to encourage physicians to take the GLUT1 deficiency syndrome into consideration as one of the possible causes when intractable seizures occur.
Diagnostic criteria for the GLUT1 deficiency syndrome are well established. By adhering to the ketogenic diet, patients with this disease are generally free of seizures and do not have to take additional anticonvulsant medication. This improves not only the chances of a healthy development but also the general well-being of young patients.
With your support, too, we hope to help children and adolescents affected by the GLUT1 deficiency syndrome and enable them to lead a “normal” life.
Get involved and support the Förderverein Glukosetransporter(GLUT1)-Defekt e. V.
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our Tasks and objectives
The glucose transporter (GLUT1) deficiency syndrome was first described in 1991 by Prof. De Vivo in the United States. PD Dr. Joerg Klepper started research in Germany in 1999.
The GLUT1 deficiency syndrome is one of the few childhood epilepsies which is caused by a deficiency of the metabolism, yet is easy to treat. The diagnosis and treatment of this newly discovered metabolic disease which is little known world-wide is basically concentrated on the USA and Germany; in most parts of Europe, South America, Asia and other regions of the world the GLUT1 deficiency syndrome is still unknown.
Physicians and scientists have achieved a great deal in a short time. However, due to empty budgets for research and health care and the fact that the number of undetected cases of people affected by GLUT1 deficiency syndrome is rightly assumed to be high, the main focus of the Förderverein Glukosetransporter(GLUT1)-Defekt e.V. is on the following tasks and objectives:
support of the research and education on the GLUT1 deficiency syndrome and its methods of treatment
any form of educational publicity related to the GLUT1 deficiency syndrome and its methods of treatment, especially the ketogenic diet
support of families with GLUT1 diseased children by collecting and distributing information about the GLUT1 deficiency syndrome
support of inter-communication between affected families, physicians, dieticians, clinics and research centres.
Note: You can find in-depth information on tasks and objectives of our charity in our statues (in German only).
Tasks and objectives
- Support for research and teaching on the
GLUT1 defect and its treatment options
- Any kind of educational work on the GLUT1
defect and its therapeutic options,
especially the ketogenic diet
- Supporting families with children suffering
from GLUT1 deficiency with up-to-date
information documents and the continuous
collection and processing of
all known data on the disease
- Promotion of the flow of information
between affected families, doctors, dieticians,
clinics and research institutionsNote:
For the complete purpose of the association
please refer to our statutes.
The bodies of the support group are:
- the general meeting
- the committee
- the advisory board. The activities of the bodies are performed by its members in a honorary capacity.
The committee members according to § 26 BGB are:
President – Anke Heilmann
Vice-President – Heike Isbruch
Treasurer – Andreas Wähnert
It can be enlarged by up to two assessors.
The Advisory Board
For the specialized advice as well as for the support of inter-communication, the committee can appoint an advisory board.
Members of the advisory board are:
- PD Dr. med. Joerg Klepper
- Medical Director – Department of Pediatrics
- Medical Centre Aschaffenburg – Germany
- Baerbel Leiendecker
(officially recognized dietician Department of Pediatric Neurology University of Essen - Germany) Note: You can find in-depth information on tasks and objectives of our charity in
our statues (in German only).