๐๐๐๐๐๐๐ ๐ ๐๐๐๐๐๐ is a Swiss foundation that helps children and young people that have very rare or incurable disease to realize their dream. One of the girls patronized by the organization wanted to meet Brian – and she did!
๐ช๐๐๐จ๐ฎ๐ญ ๐́๐ญ๐จ๐ข๐ฅ๐ ๐๐ข๐ฅ๐๐ง๐ญ๐: “We are a non-profit charitable organization operating throughout Switzerland, with offices in Lausanne and Zurich. Since 1993, we have been providing moments of happiness and exceptional experiences to children and adolescents living with an illness or a disability. For them, we get the stars. We make their dearest dream come true and also offer them and their families various excursions and leisure activities. Our work is supported by a Foundation Board, an Advisory Board, and volunteers. Our services are financed exclusively by donations.”
Check out รtoile filante website:
➡️ https://etoilefilante.ch/fr/
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| Photo credits: รtoile filante; concert photo - usgang.ch (at Rock Oz'arรจnes, Switzerland, 2010) |
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On that summer evening, Anissa, 18 years old, was excited but also feeling a bit apprehensive. In a few hours, she'd attend the concert but especially she'd meet her idol for 5 years now... Brian Molko, lead singer of the British band, Placebo. Rendez-vous was arranged before the gig... and suddenly, here he comes, he's here for Anissa, open and friendly. All of the sudden, all her fears disappeared, and the young girl was able to chat with him, especially about their common passion for theatre arts. Anissa has been learning improvisation for a few years now, and Brian studied drama before choosing the music stage as a way to express himself.
Anissa got a picture signed by the whole band. The singer apologized for having to go to do some interviews but before leaving, he made sure that she, along with the volunteer from the association, would get the best seats, down there, right in front of the stage! From there, Anissa would have the best view, and could enjoy the gig fully.
On the way back home, she felt so happy, she was even wondering if she didn't dream this all!
(๐ธ́๐ก๐๐๐๐ ๐๐๐๐๐๐ก๐ "๐ด๐๐๐ ๐ ๐, ๐๐๐๐ก๐๐๐ ๐ต๐๐๐๐ ๐๐๐๐๐", 2010)
๐ชThere's a reason I wanted to share this article with you exactly today. Tomorrow, February 28th, is ๐พ๐๐๐๐ ๐น๐๐๐ ๐ซ๐๐๐๐๐๐ ๐ซ๐๐.
▪️Any disease affecting fewer than 5 people in 10,000 of population is considered rare. Although this might appear small, it translates into approximately 300,000 people. Most patients suffer from even rarer diseases affecting 1 person in 100,000 or more.
▪️There are about 7,000 rare diseases, and the list is constantly being completed. Those are phenylketonuria, mucoviscidosis, Duchenne Muscular Dystrophy, sarcoidosis, Hutchinson-Gilford Progeria Syndrome and many many more, most of which you have never ever heard about! About 65% of people live with quite severe disorders and disability. About 30% of children born with a rare disease are dead until they’re 5...
▪️๐พ๐๐๐๐ ๐น๐๐๐ ๐ซ๐๐๐๐๐๐ ๐ซ๐๐ is an observance held on the last day of February (comes from February 29th being a “rare” date that only exists in a leap year, once in four years). It was established in 2008 to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare, unknown or overlooked illnesses. Treatment for many rare diseases is insufficient, hardly accessible and expensive.
๐Every year, on ๐พ๐๐๐๐ ๐น๐๐๐ ๐ซ๐๐๐๐๐๐ ๐ซ๐๐, thousands of events are organized across the world. But everyday work of enthusiasts who make ill persons’ life easier and happier means, I guess, even more๐
Post by Olga
