Уже в семнадцатый раз на ежегодном, благотворительном приеме фонда «Даунсад Ап», и уже почти как семь лет на учрежденном им и фонде «Синдром любви», собралось более 60 важных гостей включая и самих «особенных детей». В этом году 18 мая в самом центре столицы при поддержке инвестиционной компании «Велес капитал» встреча прошла в кафе «Март». Поводом мероприятия стал благотворительный аукцион в пользу детей страдающих синдромом Дауна. Одним из лотов стали поделки, сделанные подопечными фонда.
Корреспондент сайта «Лаймтайм» узнал все основные детали создания фонда, его цели и то, как и с какой помощью может жить, развиваться, социализироваться и даже работать ребенок с синдромом Дауна в современном мире. На вопросы ответили Анна Романовна Португалова — директор благотворительного фонда «Даунсайд Ап» и учредитель фонда «Синдром любви», а также основной друг и партнер фонда генеральный директор инвестиционной компании «Велес Капитал» Гнедовский Алексей Дмитриевич.
««Синдром любви» — это благотворительный фонд, созданный в 2016 году для поддержки людей с синдромом Дауна. Фонд работает ради будущего людей с этим заболеванием. С помощью фонда очень многие родители решили оставить своих «особенных детей» в семьях, а не отказываться от них, как принято в нашей стране. Статистика показывает, что в России процент отказа от таких детей намного выше, чем в других странах. Более того, например в Америке и вовсе нет домов, куда можно отправить такого ребенка. И это всё именно из-за того, что программа для людей Даунов очень развита там и ребенком занимаются специалисты с самого его рождения. Также немаловажно, что работа ведется и с родителями. Для них важно получить корректно и профессионально всю необходимую информацию о дальнейшей жизни и воспитании такого ребенка.
Наш фонд дает возможность людям с синдромом Дауна заниматься спортом, творчеством, волонтерством, способствует их трудоустройству, рассказывая обществу о людях с синдромом Дауна в информационных проектах. Даже в нем самом работают люди с этим диагнозом, но, конечно, не без помощи профессионалов. Недавно такой сотрудник появился в Сколково. Это самая главная часть в продолжение жизни такого человека — помощь, поддержка! Семьи, в которых родился ребенок с синдромом Дауна, получают бесплатную психолого-педагогическую и социальную помощь от основного центрального учредителя и партнера — фонда «Даунсайд Ап», который был основан двадцать пять лет назад. Наша основная цель и философия фонда — это создать мир, в котором у людей с синдромом Дауна есть все возможности для современной, полноценной жизни», — Резюмировала Анна Романовна.
— Алексей Дмитриевич, расскажите, пожалуйста, о своей истории участия в этом фонде?
— Я помогаю фонду уже почти двадцать лет, практически с момента его основания. Основателем фонда является Джереми Барнс, который проработал в России несколько лет и узнал, что в России фактически отсутствует система медицинской помощи и социального обеспечения для детей с подобным диагнозом. Так в 1996 году появился детский благотворительный фонд «Даунсайд Ап», а для удобства российских семей — созвучное название «Синдром любви». Была немаловажна поддержка Фонда из-за границы от таких компаний как: «Boeing», «Shell», «Exxon Mobil» и многих других. Но мировые события повлияли на то, что более 30% зарубежной помощи фонд потерял. Однако мы всегда в содружестве с фондом и никогда не оставим его без помощи, как и многие наши российские друзья. Некоторые медийные люди участвуют в наших мероприятиях абсолютно бесплатно. Ведь самая главная цель — объединять, помогать, поддерживать, чем мы и занимаемся столько лет путем проведения и таких аукционов, которые помогают собрать серьезные средства в помощь детей с синдромом Дауна.
Программа мероприятия завершилась выступлением Петра Налича, который дал полноценный концерт. Он исполнил свой известный хит «Гитар-Гитар», с которым выступал на Евровидении. И другие треки, которые уже успели покорить сердца слушателей.
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