LOCAL CONTACTS and SUPPORT GROUPS
If you would like to get in touch with someone in your State who has not published their email address, (names listed in black) please contact Webmaster and your message will be passed on.
If you would like to post your details on this list, please use the form on the Register page.
Western Australia
We held our inaugural meeting in May 2004 followed up by a larger gathering in November 2004 and have been meeting twice a year ever since.
Most of us had never met a fellow-sufferer before. We all had similar experiences regarding diagnosis.
The next Support Group Meeting will be held in Mandurah on Thursday 15 May from 1.00am - 3.30pm. For details, see Flyer.
Jenny
Joan
Rae
New South Wales
There will be a support group meeting in April. See details in Flyer
Mariella
Paul R
Victoria
Elizabeth Foster - Co-ordinator
Deb Colville - Ophthalmologist
Vanessa
The Victorian support group meets three times a year at the Royal Victorian Eye and Ear Hospital. If you would like to receive their Newsletter, contact Elizabeth.
South Australia
Queensland
Tasmania
Australian Capital Territory
Northern Territory
New Zealand
United Kingdom
United States
Judy is the Moderator for the Bulletin Board on the BEBRF site so if you have any questions before venturing onto the BB, please ask Judy.
Lynn is from California and is happy to share his experiences of BEB with us:
"I have had BEB since 1960, was misdiagnosed (twice) until 1990, when I was given a correct name for my condition and hope for its treatment, with Botox. Since then I have been periodically treated for BEB by 7 different physicians from both East and West coasts of the US.
Having been frustrated many times by the ignorance of physicians about BEB and its cousins, HFS, Meige, etc., I am empathetic with all people who suffer from these dystonias and I hope to help as I have been helped in the past. I am blessed to have had so many really good physicians to help me. I am also appalled at the number of medical "experts" who have no idea what we are going through.
I am currently BEBRF area coordinator for Riverside County, California. Since the county is sparsely populated, I mostly contribute to the BEBRF Bulletin Board, where you can find me nearly every day.
I am here to serve however I can. I welcome inquiries about BEB and my personal treatment and progress; using the BEBRF Bulletin Board for inquiries and responses makes the best use of all our experience and knowledge."
Derek is from Louisiana
Debbie
Debbie is from Illinois.
Shanasy
Shanasy is from Illinois.
Turkey
Pyasa