Chairman's Message

Chairman's Message

Mark K 2

I would like to start by sending out a really big thank you to the members and supporters of the Masonic Lodge West Epping who recently donated $1,500.00 to the Association.  To honour this most generous donation the Committee voted last meeting to combine these funds with other donations, both small and large, received from other generous members and supporters of the Association to fund $7,000.00 worth of equipment, for the Ryde Hospital Speech Pathology Department in support of GBS/CIDP patients; equipment they are not able to fund via internal procurement You may recall the Association co-donated a FEES machine to the same team some time ago. You will find an article inside that demonstrates the immense benefits to both staff and patients that have ensured since FEES was introduced.  These results clearly validate our ongoing strategy of building relationships with health teams, identifying shortfalls in equipment they need to provide the very best care to GBS/CIDP patients and working with them to help deliver this equipment and significantly improve patient models of care and outcomes.

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Chairman's Message

on . Posted in About Us

Mark K 2

I would like to start by sending out a really big thank you to the members and supporters of the Masonic Lodge West Epping who recently donated $1,500.00 to the Association.  To honour this most generous donation the Committee voted last meeting to combine these funds with other donations, both small and large, received from other generous members and supporters of the Association to fund $7,000.00 worth of equipment, for the Ryde Hospital Speech Pathology Department in support of GBS/CIDP patients; equipment they are not able to fund via internal procurement You may recall the Association co-donated a FEES machine to the same team some time ago. You will find an article inside that demonstrates the immense benefits to both staff and patients that have ensured since FEES was introduced.  These results clearly validate our ongoing strategy of building relationships with health teams, identifying shortfalls in equipment they need to provide the very best care to GBS/CIDP patients and working with them to help deliver this equipment and significantly improve patient models of care and outcomes.

As part of our ongoing strategy of examining new and innovative ways we can help support people impacted by GBS/CIDP, a number of the Committee have been working collaboratively with CSL, manufacturers of IG in Australia, also a company called Medicine X, to develop new and improved ways we can raise awareness about GBS/CIDP.  Through this partnership we have developed new GBS/CIDP information sheets to replace our earlier information with booklets that required updating to keep them relevant.     

Further, for many years I have had a desire to develop information videos as well because people absorb information differently. As such, I have been working closely and with the abovementioned teams to develop awareness videos and we conducted some filming last week in the form of a Q&A about my CIDP journey.

We hope to have the awareness information sheets and video/s out in the public arena in the coming months.  Why videos? A video helps break up a boring website just full or lines of information and you will note when we launched our new website a number of years ago, we included more graphics and photographs.

This theme will continue with hopefully some podcasts added to the website moving forward as they say rather than just blurbs of information.  As mentioned in previous articles we have a Communications Sub-Committee overseeing our communications strategy and you will note some changes (hopefully improvements) to our website over time.  If you have any feedback about the website please do not hesitate to call us. Hope to meet some of you at our next meeting on 2nd November.

Cheers Mark.