Chairman's Message December 2018

We have had a very busy time that has been a product of hard work, commitment, consultation, collaboration and not a small measure of patience and determination over the past 18 months to deliver improved outcomes for those impacted by GBS/CIDP. A big thank you to our Committee who continue to step up to the mark, exceed expectations and break new ground in this space.

It is with great pride and not a little relief I have to report the QST machines have arrived at both Westmead and John Hunter Hospitals. Virtual high fives!!! With regard to Westmead Hospital Professor Vucic and his team invited the Committee to attend an appreciation luncheon at the hospital on Thursday 22nd November, 2018 where the QST machine was formally donated (some photos inside). I say great pride as my discussions about the QST machine donation started in early 2017 with Professor Vucic and thence followed a number of abortive funding strategies before my direct appeal to the Minister for Health The Hon Brad Hazzard enabled us to deliver two QST machines rather than just one (see letter below). Unless you have been through the process it can be very difficult process to donate equipment to a hospital as both Ken and Trish have also experienced with previous donations.mark-300x315

However, the effort is most definitely worth it when you see the smiles on the faces of the staff knowing they have the very best equipment available to help their patients. I say with not a little relief as my strategy was to aim high for a result that would see QST available to a significant cohort of the NSW population and whilst Westmead is one of the major health facilities in NSW/Australia, accessibility for those in regional areas is problematic. For many, John Hunter Hospital is far more accessible, especially the growing population on the NSW north coast. Being eventually able to fund both is a major coup and a great leap forward for neuropathic diagnostic services in areas serviced by these two great health facilities.

As Professor Vucic will attest, when our funding strategy options began to fall by the wayside, he expressed some doubt if we could get this project across the line and did not like our chances. However, I was determined to ensure we could get the best result for our expenditure and also to keep faith with the spirit and intent behind the major source of the funds, the ICAP Charity Day 2016. Whilst I cannot say I was quietly confident, I was confident in our cause and my ability to put a good case to the Minister. The rest is history as they say. A great result all round!

We have also been working on updating our communications strategy including information booklets and also developing information videos with a company called Medicine X. A few weeks ago, I participated in some filming for the CIDP awareness video and was able to see some of the early artwork renderings. We hope to have some results in the first half of 2019 and work on the GBS video moving forward.

The Association continues to support Project Magic with Jack Daniels and Magic Macey performing at our recent Christmas party. All present, both young and not quite so young, were absolutely mesmerised by the tricks and illusions on display. Every time I see a performance of the magicians from Project Magic I am continually perplexed by the magic tricks and try as I might I just cannot work out how they do them! Of course, this is one of the benefits of Project Magic for rehabilitation patients to both engage the mind, body and spirit and to have fun. This is a fabulous initiative and if you get the opportunity to attend a Project Magic event my advice is take it with both hands as you never which hand the red ball will end up.

On that note, on behalf of the Committee, I wish you all a joyous Christmas and fun filled New Year.

Best wishes.

Mark