The Sound of ...Edelle!

This is the fundraising page of Edelle Croghan
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from € 1.000 (72%)

Hello all! 😊

I am writing to ask for your help.   In August 2016 I took part in a fundraising event “The Voice of Shell” for the rare disease OI (Osteogenesis Imperfecta) which was a huge success and a really great night so we’re doing it again except this time it will be even better.  

Most people have never even heard of this disease so awareness desperately needs to be raised as well as funds for research.  Currently, there isn't a database anywhere in the world for OI patients so it’s the intention of this foundation to create one which will cost in the region of €600,000 so every cent that is raised from this event will go directly to the foundation to create a worldwide data base for OI and through your help we can change the lives of OI sufferers all around the world who desperately need it.

OI was highlighted on Dutch national TV channel Hart van Nederland last Sunday, you can find it here if you'd like some more info.

I have met some of the most amazing people who suffer from OI and while we sometimes take things for granted they just want to live their life and we want to help them to try and make their lives a little better so I would like to make a heartfelt plea to you all to PLEASE PLEASE HELP US TO HELP THEM

For those of you who would like to attend tickets are available HERE and for those unable to attend or living outside of The Netherland but would like to donate then please do so via this page.

 Most grateful if you could please share this where appropriate.

Thank you so so much for your precious time and (hopefully) your generous donation!

Edelle.

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