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Фонд медицинских исследований Ара Парсегиана: в поисках лекарства от болезни Ниманна-Пика типа C
Фонд медицинских исследований Ара Парсегиана — некоммерческая организация, занимающаяся поиском лекарства от разрушительной болезни Нимана-Пика типа С. Это редкое и фатальное генетическое заболевание поражает детей и молодых людей, вызывая прогрессирующее неврологическое ухудшение, судороги и, в конечном итоге, смерть. Фонд был основан в 1994 году легендарным футбольным тренером Нотр-Дама Ара Парсегяном после того, как у трех его внуков обнаружили болезнь.
С момента своего основания фонд был привержен финансированию исследований причин и возможных методов лечения болезни Ниманна-Пика типа C. Благодаря партнерским отношениям с ведущими медицинскими учреждениями и исследователями по всему миру они добились значительного прогресса в понимании этого сложного расстройства.
Одной из ключевых областей деятельности фонда было выявление потенциальных лекарственных средств, которые могли бы замедлить или остановить прогрессирование болезни Ниманна-Пика типа С. Они поддержали многочисленные клинические испытания, направленные на тестирование новых лекарств у пациентов с этим заболеванием, включая несколько многообещающих соединений, которые продемонстрировали ранние признаки эффективности.
В дополнение к своей работе по разработке лекарств фонд также поддерживает фундаментальные исследования, чтобы понять, как болезнь Ниманна-Пика типа С влияет на клетки и ткани в организме. Сюда входят исследования того, как метаболизм холестерина нарушается у больных, а также исследования других клеточных путей, которые могут быть вовлечены в патогенез заболевания.
Еще одним важным аспектом их работы является повышение осведомленности о болезни Ниманна-Пика типа C среди медицинских работников, политиков и представителей общественности. Рассказывая другим об этом редком заболевании и его разрушительных последствиях для пострадавших от него семей, они надеются усилить поддержку исследований, направленных на поиск лекарства.
В целом, миссия Фонда медицинских исследований Ара Парсегиана ясна: найти лекарство от болезни Ниманна-Пика типа С с помощью инновационных исследовательских инициатив, объединяющих экспертов из разных дисциплин. При постоянной поддержке доноров по всему миру они уверены, что смогут реально изменить жизнь тех, кто пострадал от этого разрушительного состояния.
parseghian.org
