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The Ara Parseghian Medical Research Foundation: Trovare una cura per la malattia di tipo C di Niemann-Pick
L'Ara Parseghian Medical Research Foundation è un'organizzazione senza scopo di lucro che si dedica alla ricerca di una cura per la devastante malattia di Niemann-Pick di tipo C. Questa malattia genetica rara e fatale colpisce bambini e giovani adulti, causando un progressivo deterioramento neurologico, convulsioni e infine la morte. La fondazione è stata fondata nel 1994 dal leggendario allenatore di calcio di Notre Dame Ara Parseghian dopo che a tre dei suoi nipoti fu diagnosticata la malattia.
Sin dal suo inizio, la fondazione si è impegnata a finanziare la ricerca sulle cause e sui potenziali trattamenti per la malattia di Niemann-Pick di tipo C. Attraverso collaborazioni con le principali istituzioni mediche e ricercatori di tutto il mondo, hanno compiuto progressi significativi verso la comprensione di questo complesso disturbo.
Una delle principali aree di interesse della fondazione è stata l'identificazione di potenziali terapie farmacologiche che potrebbero rallentare o arrestare la progressione della malattia di Niemann-Pick di tipo C. Hanno supportato numerosi studi clinici volti a testare nuovi farmaci in pazienti con questa condizione, inclusi diversi composti promettenti che hanno mostrato i primi segni di efficacia.
Oltre al loro lavoro sullo sviluppo di farmaci, la fondazione sostiene anche la ricerca di base per capire come la malattia di Niemann-Pick di tipo C colpisce le cellule e i tessuti del corpo. Ciò include studi su come il metabolismo del colesterolo viene interrotto negli individui affetti, nonché indagini su altri percorsi cellulari che potrebbero essere coinvolti nella patogenesi della malattia.
Un altro aspetto importante del loro lavoro è la sensibilizzazione sulla malattia di Niemann-Pick di tipo C tra gli operatori sanitari, i responsabili politici e il pubblico. Educando gli altri su questa rara condizione e sui suoi effetti devastanti sulle famiglie che ne sono colpite, sperano di aumentare il sostegno agli sforzi di ricerca volti a trovare una cura.
Nel complesso, la missione dell'Ara Parseghian Medical Research Foundation è chiara: trovare una cura per la malattia di Niemann-Pick di tipo C attraverso iniziative di ricerca innovative che riuniscano esperti di diverse discipline. Con il continuo supporto dei donatori di tutto il mondo, sono fiduciosi di poter fare davvero la differenza nella vita delle persone colpite da questa condizione devastante.
parseghian.org
