Joas lives in The Netherlands. Straight after his birth in July 2006, he developed breathing problems and was brought to a hospital...
On Saturday the 11th of May the group of cyclists arrived home after a very special week. The group cycled over 325 miles in 5 days and visited all the 5 MSS-families living in the UK. The cyclists got a warm welcome from all the families and is was very special and emotional to meet each other and sharing experiences.
The group cycled 80-100 miles a day and the many hills made the tour tough and the days long.
In de periode 2011 t/m 2014 kunnen we aan de slag met het ontwikkelen van een zorgstandaard voor MSS. Samen met de VSOP (koepelorganisatie) wordt voor 12 zeldzame aandoeningen waaronder het Marshall-Smith syndroom gewerkt aan het ontwikkelen van zorgstandaard. Een forse investering in de kwaliteit van zorg voor MSS. Het totale project is mogelijk gemaakt dankzij een bijdrage van bijna € 2 miljoen van het Ministerie van VWS via het CIBG/Fonds PGO.
The Dutch children with Marshall Smith Syndrome (Nina, Adriana and Joas) in the media.
In Dutch Newspapers, on Television and Radio there was a lot of attention for the Marshall-Smith syndrome.
On Whit Monday Anouk, Sicco, Hinke and Matthijs cycled the "Elfstedentocht" (11 Towns Tour). They were sponsored for the MSS Research Foundation.
In just 13 hours they cylced 240 km past all the famous Frisian towns. Their fundraising event brougt in the fantastic sum of € 1,435.00!
The Board of the MSS Research Foundation was very impressed and pleased with the fantastic result.
Restaurant employee Mrs. Sonja Peters will be sponsored by many companies and private donors for her Four Days Walking Tour, the ´Nijmeegse Vierdaagse`. From Tuesday 15 up to Friday 18 July 2008 she shall walk each day fifty kilometres to raise money for the MSS Research Foundation.
Mrs. Peter does this especially for her colleague Ana Godani because her daughter Adriana has Marshall-Smith Syndrome.
The MSS Research Foundation is very happy with this initiative and is curious how it will end!
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