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Die Ara Parseghian Medical Research Foundation: Suche nach einem Heilmittel für die Niemann-Pick-Typ-C-Krankheit
Die Ara Parseghian Medical Research Foundation ist eine gemeinnützige Organisation, die sich der Suche nach einem Heilmittel für die verheerende Niemann-Pick-Krankheit Typ C verschrieben hat. Diese seltene und tödliche genetische Störung betrifft Kinder und junge Erwachsene und verursacht eine fortschreitende neurologische Verschlechterung, Krampfanfälle und schließlich den Tod. Die Stiftung wurde 1994 vom legendären Notre-Dame-Fußballtrainer Ara Parseghian gegründet, nachdem bei drei seiner Enkelkinder die Krankheit diagnostiziert worden war.
Seit ihrer Gründung engagiert sich die Stiftung für die Finanzierung der Erforschung der Ursachen und möglichen Behandlungen der Niemann-Pick-Typ-C-Krankheit. Durch Partnerschaften mit führenden medizinischen Einrichtungen und Forschern auf der ganzen Welt haben sie erhebliche Fortschritte beim Verständnis dieser komplexen Erkrankung erzielt.
Einer der Schwerpunkte der Stiftung war die Identifizierung potenzieller medikamentöser Therapien, die das Fortschreiten der Niemann-Pick-Typ-C-Krankheit verlangsamen oder aufhalten könnten. Sie haben zahlreiche klinische Studien unterstützt, die darauf abzielen, neue Medikamente bei Patienten mit dieser Erkrankung zu testen, darunter mehrere vielversprechende Verbindungen, die erste Anzeichen der Wirksamkeit gezeigt haben.
Neben ihrer Arbeit an der Arzneimittelentwicklung unterstützt die Stiftung auch die Grundlagenforschung, um zu verstehen, wie sich die Niemann-Pick-Typ-C-Krankheit auf Zellen und Gewebe im Körper auswirkt. Dazu gehören Studien darüber, wie der Cholesterinstoffwechsel bei betroffenen Personen gestört ist, sowie Untersuchungen zu anderen zellulären Signalwegen, die möglicherweise an der Krankheitsentstehung beteiligt sind.
Ein weiterer wichtiger Aspekt ihrer Arbeit ist die Sensibilisierung von medizinischem Fachpersonal, politischen Entscheidungsträgern und Mitgliedern der Öffentlichkeit für die Niemann-Pick-Typ-C-Krankheit. Indem sie andere über diese seltene Erkrankung und ihre verheerenden Auswirkungen auf die betroffenen Familien aufklären, hoffen sie, die Unterstützung für Forschungsanstrengungen zu erhöhen, die darauf abzielen, ein Heilmittel zu finden.
Insgesamt ist die Mission der Ara Parseghian Medical Research Foundation klar: durch innovative Forschungsinitiativen, die Experten aus allen Disziplinen zusammenbringen, ein Heilmittel für die Niemann-Pick-Krankheit Typ C zu finden. Mit der anhaltenden Unterstützung von Spendern auf der ganzen Welt sind sie zuversichtlich, dass sie das Leben der von dieser verheerenden Krankheit Betroffenen wirklich verbessern können.
parseghian.org
