I am sorry that there has been such a delay in getting back to you about plans for a conference in 2002. The reason for this is because, as most of you know, the EU has given a grant which includes money for holding an Usher conference. We at Sense needed to find out more about the grant, what we could use it for and so on before I could email you.
Sense International first made an application for a EU grant on the EUSN's behalf about two years ago. We should have had an answer from the EU by December 2000. However, we heard nothing and we thought that the application had failed. Then, in June 2001, we heard that we would get some money after all.
Before I say any more about how we can use the grant, I want to thank Christina Fasser and also Fanny Bergez of Retina France for their offers of venues to host the conference. However, the application to the EU for funds specifically states that the conference will be held in the UK in September 2002.
A major condition of the EU grant is that the conference will be joint one between the EUSN and people who work with another syndrome causing congenital deafblindness, called CHARGE. Don't worry, this still means that we can still run a conference focusing on Usher, it's just that it will be in the same building as the CHARGE conference and we will have opportunities to mix with the CHARGE delegates outside of the main conference. The whole project is called CAUSE (capitals from Charge Association Usher SyndromE).
Also, a condition of the EU grant is that it will be managed from Sense but with a partnership of six organisations altogether, three representing Usher and three representing CHARGE.
Perhaps you are thinking "What about the EUSN?". Well, the EUSN is very important to the project. The EU partners for the Usher conference are Carol Brill Doran from Ireland (linking in with the organisation Fighting Blindness), a representative from ONCE, Spain and a representative from Retina France. The EU can only fund these three Usher partners, plus the three CHARGE partners to come to the planning meetings. The rest of the EUSN members will be consulted for their ideas for the conference. The EUSN will benefit, too, because, by the end of the project in March 2003, we will have lots of Usher information in six European languages, which we can send out to enquirers. Also, I trust, we will get many new members.
This news is very unexpected for most of you. However, we have had to change our plans in order to fit in with the EU grant application.
Please read the attached paper from Joff McGill for more information.
Do email me back with your questions and I will do all I can to answer them.
All the best
Marylin
overview 
back
next