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-   -   OT: Anyone living along Highway 80 (USA)? For Gorham's Disease (http://birthmark.org/board/showthread.php?t=1875)

Lise 04-23-2006 10:47 PM

OT: Anyone living along Highway 80 (USA)? For Gorham's Disease
 
Hello,

Iím from Montreal and I have a Web site in French on vascular anomalies, which provides information and support for French-speaking patients and families. Gorhamís Disease, a rare but very serious syndrome related to vascular anomalies, is one of the syndromes that Iím concerned with. The Association for Gorhams in France (their Web site www.gorhams.org has an English version) has been built around the case of a 17-year old patient, Hansel, by his family and his community, who are very dynamic.

Among all kinds of initiatives taken by the community to raise funds for this terrible disease, there is this one person I'd like to introduce to you.. Alain Hupel, a restaurant owner who lives close to Hansel and who is also a cyclist champion, will cycle Highway 80, from Chicago to San Francisco, in August 2006. A regional newspaper in France will sponsor him: All readers are invited to buy ďkilometersĒ. Alain will be travelling alone; he has already done something similar in the USA for another cause. He will take money with him for use towards 4 nights in a hotel, that is to say for only once a week. The rest of the time he will sleep out (in the open). He will need help and accommodations along the road. If you live along Highway 80 or know someone who does, Iím asking you for your help in any possible way to this important cause.

For more details, you can contact Monique, Hanselís mother and president of the Association, sheís quite fluent in English, at MONIQUESCHLOUPT @ aol.com , or myself at daoustl @ sympatico.ca

Thanks in advance for doing whatever you can in order to help Hansel and the other patients who fight Gorhams. If you read Hanselís story on the site of the Association, you will see that heís been to Childrenís Hospital in Boston last year and that he is now treated in Spain according to a protocol that Boston has prescribed. We all hope that this treatment on trial will work.

Lise Daoust
www.anomalievasculaire.org




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