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MEMBER LIAISON REPORT

As a relatively new member of the Support Group, in March 2017 I accepted the challenge to take on the position of Member Liaison Officer; this position had been filled by Lesley Reynolds since inception of the Group. I had “very big shoes” to step into; Lesley, a very compassionate lady, had kept in touch with the members over the years; I knew very few of the members and not very much about Benign Essential Blepharospasm except that I had had it for a couple of years and had Botox Injections every 10 or so weeks.

My first website registration enquiry came in on 31st March 2017 and there have been another 32 since that date, most of the registrations/enquiries have been from the eastern states with only 6 new Members registered in Western Australia. I made contact with all these new members and a number of these have had ongoing follow-ups.

I was in touch with the Northern Territory contact, mid 2017, but establishing interaction with the Queensland and New South Wales contacts was more difficult until very recently; a new contact person has been found for Victoria.

As part of a membership drive, in July/August 2017, I emailed 85 ophthalmologists and neurologists from around Australia; this included a covering Letter of Invitation in the hope that the doctor would give a copy to his/her patient. The positive response, from doctors to this mail-out, was about 13%.

Also during the year contact was made with the Editor of The Senior newspaper; our President John Yeudall wrote a great article for this publication and it was circulated in all States of Australia in July and August 2017. I was ‘Guest Author’ (unaware to me at the time) to an article about Blepharospasm, entitled ‘Like dry eyes… but not’ this was published in the Australian Journal of Pharmacy on 27/07/2017.

Some new Members were ‘picked up’ from a Facebook page ie Living with Blepharospasm, this is a worldwide forum which has some good articles, but a lot of ‘chit chat’ rubbish also; another Facebook page I loosely follow is Neuroplasticity for Blepharospasm, again a worldwide forum which is much more focused and relates to work done by Dr Joaquin Farias.

I have of recent times registered with the Australian Dystonia Support Group; this is a very friendly Australian only group, administered from Queensland and has more than 650 members.

On Monday 30th October I spent a few hours at the RANZCO Congress in Perth, I made contact with a few people, walked the floor looked at exhibitions had something to eat; it was all a bit ‘over my head’. I think if we had had a stand in the hall it would have been a lot easier.

After our end-of-year gathering, I made contact with all of our Western Australian members by either mail or email to bring everyone up-to-date on what we had achieved during the year; this month I have sent a ‘round-robin’ email to all of our Eastern State members.

John Yeudall and myself attended the Connect Group Christmas party, here we were able to put faces to names; this was followed up in January with a meeting of 3 members of Connect Group and 4 members of our Board.

I would like to thank the other Board members for their guidance and assistance throughout the year; in particular many thanks to Lesley Reynolds who has helped and encouraged me along the way.