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Ara Parseghian Tıbbi Araştırma Vakfı: Niemann-Pick Tip C Hastalığı için Bir Çare Bulmak
Ara Parseghian Tıbbi Araştırma Vakfı, yıkıcı Niemann-Pick Tip C hastalığı için bir tedavi bulmaya adanmış, kar amacı gütmeyen bir kuruluştur. Bu nadir ve ölümcül genetik bozukluk, çocukları ve genç yetişkinleri etkileyerek ilerleyici nörolojik bozulmaya, nöbetlere ve nihayetinde ölüme neden olur. Vakıf, 1994 yılında efsanevi Notre Dame futbol koçu Ara Parseghian tarafından üç torununa hastalık teşhisi konduktan sonra kuruldu.
Kuruluşundan bu yana, vakıf, Niemann-Pick Tip C hastalığının nedenleri ve potansiyel tedavilerine yönelik araştırmaları finanse etmeye kendini adamıştır. Dünyanın dört bir yanındaki önde gelen tıp kurumları ve araştırmacılarla ortaklıklar kurarak, bu karmaşık bozukluğu anlama yolunda önemli ilerlemeler kaydettiler.
Vakfın odaklandığı kilit alanlardan biri, Niemann-Pick Tip C hastalığının ilerlemesini yavaşlatabilecek veya durdurabilecek potansiyel ilaç tedavilerini belirlemek olmuştur. Erken etkinlik belirtileri gösteren birkaç umut verici bileşik de dahil olmak üzere, bu durumdaki hastalarda yeni ilaçları test etmeyi amaçlayan çok sayıda klinik çalışmayı desteklediler.
Vakıf, ilaç geliştirme çalışmalarına ek olarak, Niemann-Pick Tip C hastalığının vücuttaki hücreleri ve dokuları nasıl etkilediğini anlamaya yönelik temel araştırmaları da destekliyor. Bu, etkilenen bireylerde kolesterol metabolizmasının nasıl bozulduğuna ilişkin çalışmaların yanı sıra hastalık patogenezinde rol oynayabilecek diğer hücresel yolaklara yönelik araştırmaları içerir.
Çalışmalarının bir diğer önemli yönü de sağlık uzmanları, politika yapıcılar ve toplum üyeleri arasında Niemann-Pick Tip C hastalığı hakkında farkındalık yaratmaktır. Başkalarını bu nadir durum ve bundan etkilenen aileler üzerindeki yıkıcı etkileri hakkında eğiterek, bir çare bulmayı amaçlayan araştırma çabalarına desteği artırmayı umuyorlar.
Genel olarak, Ara Parseghian Tıbbi Araştırma Vakfı'nın misyonu açıktır: Farklı disiplinlerden uzmanları bir araya getiren yenilikçi araştırma girişimleri yoluyla Niemann-Pick Tip C hastalığına bir çare bulmak. Dünyanın dört bir yanındaki bağışçıların sürekli desteğiyle, bu yıkıcı durumdan etkilenenlerin hayatlarında gerçek bir fark yaratabileceklerinden eminler.
parseghian.org
