SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

How many bottles of wine will be drunk during the 2006/7 winter ski season in our catered chalet?

"How many bottles of wine will be drunk during the 2006/7 winter ski season in our catered chalet?"

This was the question that Jackie and David, who have spent the last 3 years running their ski chalet in Chamonix, posed to their 250 guests during the 2006/7 winter season. Their guests were asked to pay 10 Euros to enter their wine sweep and guess how much wine would be drunk during the skiing season – the person closest to the actual total would win a weeks holiday for two during the 2007/8 winter ski season.

Jackie and David became of aware of Cystinosis when they met Darren and Emma Clare whose beautiful daughter Millie had been diagnosed with the illness. Darren, Emma and Millie quickly became very close friends and now 6 years later Jackie and David have the pleasure of calling them best friends.


Millie and Family

Millie has amazing courage and spirit, and this year at 8 years old she came out to Chamonix, skiing herself for the first time, with her Mum, Dad and little brother, William. Life in a chalet is a fantastic experience as you meet lots of different people. Staying at the chalet the same week as Millie was another little girl the same age called Amelia. On the last night of their holiday Millie and Amelia put on a surprise piano concert to the other 18 guests in the chalet … to say there wasn’t a dry eye in the house would be an understatement!

"It is really at a time when you see two children of the same age next to each other that you realize the full impact that Cystinosis has on a child."

Jackie and David would like to thank all of their guests in helping to raise 1,500 Euros:

"This was only our first attempt at fundraising for Cystinosis and we are fully committed to continuing to raise funds for research into this illness and any drug breakthroughs that can be made. We already have a plan up our sleeve for fundraising next winter."

We are also delighted to announce that they are offering all Cystinosis related families a 15% discount for their holidays during the 2007/8 skiing season and preferential rates will be available during the summer also. For more information, please visit their website: www.vertetblanc.com or email info@vertetblanc.com.

The Cystinosis Foundation UK would like to raise a glass and thank Jackie and David for their substantial fundraising efforts and for their special offer to Cystinosis related families.

Oh, and the answer was 697 bottles … the wining entry was Louise Steer who guessed 698 bottles.

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