2017 has been one the busiest certainly since I have been involved. All the board members have been generously donating their time not only communicating with members new and old but also the various treaters across the country.
Funding and Application
Thanks to both Merz and Allergan we started the year with sufficient funds to proceed with confidence. Early in the year we also secured funding from the WA state government through the ConnectGroup which enabled us to print new brochures and banners.
Currently we are working on various distribution strategies to ensure that the brochures get into the hands where they will make a difference. The first batch was distributed to 300 GPs across the greater metropolitan area to address our primary objective of raising awareness of BEB, hence shortening the diagnosis period.
The next phase of targeting Ophthalmologists and Neurologists is in the planning stages. It is through the treaters that we can approach sufferers to join our group and get those ongoing benefits that we all enjoy. Lesley has been diligently trolling the shopping centres talking to the various opticians face to face.
Succession planning has been, and will continue to be, one of our biggest challenges. Our age demographic is determined by the condition so we constantly have to find committed volunteers who are willing and able to put in the time to meet our objectives. In March Nola replaced Lesley as our Member Liaison Officer. At this AGM two of our existing board members have indicated they will retire. Eunice Pyper will step down whilst Lesley Reynolds has agreed to stay on until a replacement is found. We have been fortunate to have an external volunteer in the form of Annette Clarkson who comes with impressive credentials so we would like to welcome her. It is also appropriate to thank Eunice for her contribution to our activities over the years.
End of Year function
In November we held our end of year function which was enjoyed by all those who attended. The video of the entertainment is now available on our web site. I would like to express my personal thanks to John Greenaway, my son Oliver and Nola “Plonker” Pense who joined me in making the event memorable. Who will ever get over “Needles in My Eyes”.
Two special thank yous: To SpecSavers from Garden City for their attendance and sponsorship and to Dr Jeremy Raiter who gave us a most interesting talk and demonstrated his sense of humour and video skills. What would we do without him!
The purpose was to demonstrate that even a serious condition like BEB does not stop us having fun in our lives. Hopefully we achieved that.
Whilst our focus is on the botulinum toxin injections there are other treatments we keep hearing about which seem to work for some people. You will find these on our website shortly. Anybody who is interested in pursuing any of these should consult their medical specialist.
Our website is the cornerstone of our strategy and we are so lucky to have on our team a skilled web developer in Lyn Smith.
In this changing world we are finding that social media is playing an increasingly important role worldwide. We have a Facebook page with a link to it on the website and Nola manages our input on the Facebook site “Living with Blepharospasm” which captures a worldwide audience.
Finally our audited annual accounts are now available which I propose that we adopt. We would also like to thank Colin Beck who generously audits our accounts every year on a pro bono basis.