10de Internasjonale NCL Kongress i Helsinki 5. - 8. juni 2005
I styremøte 5. mars d.å., ble det besluttet at Svein Rokne skal representere foreningen på denne kongressen. Samtidig har vi mottatt en E-mail fra Jaana Vesterinen med forespørsel om antall foreldre som ønsker å delta. Eventuelle ønsker om deltagelse/påmelding til hele eller deler av kongressen kan, om ønskelig, formidles gjennom redaktøren. Send meg i så fall en mail.
Her er den mottatte tekst:
"Dear All,
The NCL-2005 meeting is soon upcoming, being held in Helsinki on the 5-8th of June. A web site for the meeting has been recently opened at
www.ncl2005.org
In addition to the scientific program, we are presently organizing the parents' program, which would include:
1. Monday evening and Wednesday morning there would be a short overview of the previous day's program, the main scientific findings highlighted and discussed with the parents by medical students working on NCL diseases.
2. Wednesday has been planned so that it would cover the main interests of parents (see below): there will be a scientific session on the therapeutic approaches, and after that the program continues with a session that is specially targetted for the parents: Clinical update and round-table discussion where a few clinicians, NCL-workers and scientists are available for questions and discussion. The day will close up with a dinner where it is possible to continue discussions between medical doctors, scientists and parents.
Presently the funding for the parents' program is open, and I would need preliminary information about the following issues in order to continue with the arrangements:
1. How many parents will attend the parents' dinner on Wednesday evening
2. How many parents will attend ONLY the Wednesday program (tentative fee for Wednesday only will be about 30 eur depending on how much financial support we will obtain for the dinner and travels of clinicians)
3. How many parents will attend the whole meeting (200 eur) and do you feel that the overviews of previous days scientific program would be useful?
I would be grateful if you could sperad this information in your countries and come back to me with the above questions within two-three weeks, so that we would be able to finalize the parents' program by the end of March. Please do not hesitate to contact me with any questions.
Wishing you welcome to Helsinki in June, with best regards,
Jaana
on behalf of the parents' program organizers, Laura Åberg, Maria Liisa Punkari and Jaana Tyynelä
PROGRAM Wednesday 8th of March
Session V
— Molecular Therapy
13.00 - 14.30: Keynote lecture: Beverly Davidson, Iowa: NCL gene therapy from mouse to man. Invited speaker: Mark Sands, St. Louis
14.30 - 15.30: 3-4 oral presentations selected from abstracts
15.30 - 16.00: Glyn Dawson, Chicago: Al Rider memorial lecture: NCL from present to future
16.30 - 18.00: Clinical update and round table discussion
18.00: Parents’ Dinner (with invited scientists)
Institute of Biomedicine/biochemistry
POB 63
(Haartmanink. 8)
00014 University of Helsinki
Finland"