Ultragenyx FAOD Survey

The Metabolic Foundation supports Ultragenyx and Ultragenyx is currently conducting a survey to understand how LC-FAOD impacts people’s lives, iany patients or caregivers who may be interested, we would appreciate your help by completing the survey.

 Here is the link needed to complete the survey.   (www.FAODsurvey.com

 

Many Thanks

The Metabolic Foundation Team

gemmaholtby30
Hi My Name is Gemma, I am one of the founders. I am the wife to Adam, and mum to our boys as well as a retired Nurse. Hi My Name is Adam, I am one of the founders. I am husband to Gemma and father to our boys.

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  2. мню, еще в юности эта фраза встретилась мне в какой-то книжке, и я долго не знал, что принадлежит она Оскару Уайльду. Мысль меня тогда поразила, как все парадоксальное. Потому что мы-то жили согласно поговорке «по одежке встречают, по уму провожают». Здесь все было понятно: как ни наряжайся, а глупость не скроешь. И вообще, дело не во внешности, а в истинных твоих, то есть внутренних достоинствах. Взрослые говорили: главное, какой человек.

    При этом глубоком убеждении мы все же тщательно следили за своей внешностью. В юности человек круглосуточно не сходит с подмостков. Поэтому надо выглядеть. Иначе зачем мама старательно перешивает для меня куртки старшего брата, а я свои непослушные волосы мучаю бриолином? Нет, все имеет отношение именно что к чему-то главному во мне.

    Вернее, во мне все главное, потому что все — мое, и мой внешний вид, голос, жест и есть Я в самом при этом неоспоримом своем проявлении. И ни одна девочка не согласится с песней, что вот, мол, «не родись красивой, а родись счастливой». Каждая хочет быть красивой и знает: это и есть самый короткий путь к счастью. А дурнушки пусть читают на школьных вечерах Заболоцкого про то, что такое красота: «Сосуд она, в котором пустота, или огонь, мерцающий в сосуде». Скучно и нужно только для тех, кому не повезло.

    Фраза пришлась кстати. Вот, например, в книге или в кино сразу видно, когда появляется предатель или бандит. Руки у него потеют, улыбка фальшивая, брюки и рукава куртки короткие, наигранный смех, а взгляд при этом отводит в сторону — обдумывает, как бы лучше обмануть. Остальные герои просто наивные, не сразу замечают. Но мы-то видим сразу. Да и в жизни тот, кто нам неприятен, имеет, как правило, отталкивающие манеры, внешность и даже фамилию. По манере одеваться легко можно определить, кто щелкопер, а кто кинозвезда.

    Но все мы еще при этом и идеалисты, ибо свято убеждены в собственной нравственной непорочности. Искренне верим в то, что говорим, и думаем, что думаем то, что думаем в данную минуту, а хотим того, чего хотят все хорошие люди на земле. Тут и соображать ничего не надо — достаточно посмотреть в глаза, которые ведь никогда не лгут (эта поговорка годилась).

    Боже, с какой наивностью и бесстрашием можно было тогда предложить посмотреть в глаза и как хороша была жизнь в лучезарно-одномерном мире!

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