The General Assembly of March 31, 2012 was a great moment of friendship.
Around fifty participants were able to make the trip. In the morning it was the normal annual general meeting. In his status report, the President recalled all the work performed by the Administration Board, activities on rewriting the medical card and the guide for caregivers, writing and sending three newsletters, updating the website, various meetings and gatherings.
He underscored the memorable meeting with Ms. Billie Duncan, President of the American sister Association CTWHH (“Cadasil Together We Have Hope”). He particularly thanked the association members who volunteered either for fundraising or to lend a hand in putting together the newsletter, to assist in the creation of the Facebook Page or to promote CADASIL disease on a television program (see the Journal of Health on France 5 TV).
He stressed on the necessity to actively participate in research funding. While our means will always be modest, this contribution is essential to demonstrate our commitment to researchers and public authorities. In 2011, the assistance we provided was €10,000. This funding will allow continuing efforts to enrich the monitoring database of patients and start a 24-hours study of arterial pressure analysis of these patients. These data are lacking, but they may prove to be very relevant for proper monitoring of patients.
The general meeting is followed with lunch which is joined by some members of the medical team.
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The afternoon was dedicated to medical conference, with the presence of Doctor Anne Joutel who has shared with us on some good news. Her research is making good progress |
| Great strides have been realized in understanding the disease. Cooperation with various laboratories, in the USA, Germany and Denmark will accelerate our knowledge. A first therapy trial of laboratory called "proof of validation or concept" will begin for a period of 30 months. It should validate, we hope, the hypotheses following the results of some of the work of her laboratory. |
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| Professor Chabriat provided an update on ongoing research within his medical team, with the imminent publication of the long follow-up study of patients, monitoring of patients with the 7-Tesla MRI machine, etc. |
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Finally, the medical team responded to various questions from members.
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You will soon receive the full report of the Annual General Meeting and the medical conference. |
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