The Foundation aims to promote projects in science, research, education and support to Huntington’s disease afflicted patients and their families, as well as any other matter related to the disease.
The foundation is active both in Switzerland and internationally.
It is registered in the commercial registry of the Canton of Bern and is under the supervision of the Federal Supervising Board for Foundations.
(Formerly Huntington`s Chorea)
is a nerve disorder caused by an inherited genetic abnormality. The hereditary disease is named after the American neurologist George Huntington who described it in 1872 and ascribed it to a genetic mutation.
In this genetic disease, a defective gene causes the death of certain brain cells. The child of a person with this disease has a 50% risk of inheriting the gene and any individual carrying the abnormal gene will over time develop the disease.
Individuals who have not inherited the gene will not develop the disease and neither will their descendants.
The disease does not “skip” a generation. However, if an affected person dies without being diagnosed, it may lead to such false impression.
Physical and mental changes may occur simultaneously, consecutively or alternatively.
- Physical changes include restlessness, clumsiness, slurred speech and difficulty in swallowing both solids and liquids
- Mental symptoms are manifested by changes in personality that may include: irritability, apathy, depression, loss of control, withdrawal.
Switzerland has approximately 500 to 700 known affected people.
As a general rule, the condition becomes apparent between the ages of 35 and 50.It takes 20-25 years, on average, between the onset of the disease and the patient’s death.
Huntington’s disease is called a “familial disease”, because of the descendant’s high risk of inheriting the disease and as relatives are in any case exposed to the considerable emotional, physical and financial difficulties that it causes.
Patients experience a series of vastly destabilizing events. First as a witness to the deteriorating condition of a parent with the disease. Then the uncertainty of whether they themselves carrying the same gene followed by having to make the difficult decision regarding genetic testing. A positive result will need to be accepted: “I cried for a year.” Then comes the self-diagnosis phase: “Is it a sign of the onset of the disease that I dropped a glass?” This leads to the mental denial of the diseases’ actual manifestation which is followed by a long and painful process, spanning approximately 20 years, of slow degradation of the body and mind leading to death. All this in perfect consciousness, almost until the end.
Consultation with a Huntington’s disease specialist along with recommended clinical examinations are useful for establishing a correct diagnosis.
These measures may also lead to early detection, even before the first symptoms are apparent.The person at risk, who carries the defective gene, has no possibility to avoid that the disease will eventually be triggered.The specific gene and the process of transformation (mutation) that causes the onset of Huntington’s disease was identified in March 1993. This discovery made screening of those at risk and direct diagnosis of the disease possible.
Currently, there is no cure or treatment available to stop the progression of the disease and also no possible prevention.
There is, however, medication available on the market to treat the symptoms. These can significantly improve the comfort and lives of patients. A balanced diet and healthy life-style will also contribute to improving the overall quality of life for the affected person.
In neurological research centers around the world, scientists are working specifically on Huntington’s disease, in order to find ways to control or cure the disease. In most Western countries self-help and organizations of lay persons have joined the “International Huntington Association” (IHA) which was formed in 1981.
Stiftung der Schweizerischen Huntington-Vereinigung
c/o Neurozentrum Siloah
Worbstrasse 316, 3073 Gümligen
Postal checking account 60-385229-2
IBAN CH87 0900 0000 6038 5229 2