Guest guest Posted March 14, 2010 Report Share Posted March 14, 2010 G'day all, Just thought I'd mention what turned out to be a wonderful night of JIA awareness on Friday- the 2010 Steel Magnolia Awards dinner here in Newcastle. It's all about recognising women who have overcome adversity and made a difference. I was a guest speaker, and though absolutely terrified managed to spruik to a captive audience of about 350 about Juvenile Arthritis (among other stuff). What's even better is that the lady who won - t Roosendaal- is a 72 y.o. survivor of JIA (diagnosed around 4 years of age). Between us we managed to make mention of JIA at least 3 times throughout the night! [] I know well, we are on the Greater Newcastle Community Forum on Health together and we joined forces to bring about the final amount of pressure needed to tip the scales in favour of starting up the Paediatric Rheumatology Service here at the Hunter Children's Hospital. Atfer me campaigning for about 3 years, our Forum hosted a JIA Seminar, and then threatened to have me chain her naked to the front gates of the hospital unless they took us seriously. (I am SO glad it didn't come to that! ROFL) OK, that's it from me for now. Been a big week. Bayly is in month 4 of a neck flare-up, about a month of left hip flare, and starting a second week with a swollen left wrist - again- it only got aspirated/injected in September! His jaws, left shoulder and knees also join in the party from time to time, but I don't know if that's referred pain. Still no word on when he will start Enbrel. He certainly bloody well meets their criteria! [] Hugs and positive thoughts for those who need 'em! Jo Bayly, 7, extended oligo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2010 Report Share Posted March 15, 2010 Sounds wonderful Jo! Congrats. Sure wish I could Express Mail Bayly 's 4 weeks worth of Enbrel and then just tell the insurance we lost it when the power was out (has to be refridged and we keep having storms knock out the power). Really hope he gets it soon. Kat's been on it now for several months and it has made a huge difference. Good luck! Kirsten, Katherin, 5, spondy > > G'day all, > > Just thought I'd mention what turned out to be a wonderful night of JIA > awareness on Friday- the 2010 Steel Magnolia Awards dinner here in > Newcastle. It's all about recognising women who have overcome adversity > and made a difference. I was a guest speaker, and though absolutely > terrified managed to spruik to a captive audience of about 350 about > Juvenile Arthritis (among other stuff). What's even better is that the > lady who won - t Roosendaal- is a 72 y.o. survivor of JIA > (diagnosed around 4 years of age). Between us we managed to make > mention of JIA at least 3 times throughout the night! [] > > I know well, we are on the Greater Newcastle Community Forum on > Health together and we joined forces to bring about the final amount of > pressure needed to tip the scales in favour of starting up the > Paediatric Rheumatology Service here at the Hunter Children's > Hospital. Atfer me campaigning for about 3 years, our Forum hosted a > JIA Seminar, and then threatened to have me chain her naked to > the front gates of the hospital unless they took us seriously. (I am > SO glad it didn't come to that! ROFL) > > OK, that's it from me for now. Been a big week. Bayly is in month 4 of > a neck flare-up, about a month of left hip flare, and starting a second > week with a swollen left wrist - again- it only got aspirated/injected > in September! His jaws, left shoulder and knees also join in the party > from time to time, but I don't know if that's referred pain. Still no > word on when he will start Enbrel. He certainly bloody well meets their > criteria! [] > > > Hugs and positive thoughts for those who need 'em! > > Jo > Bayly, 7, extended oligo > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2010 Report Share Posted March 15, 2010 I am so glad you feel that it was an successful evening. You know we are proud of you for all you do to raise the awareness of JIA even if you are in Austrailia. I hope that Bayly is better soon, such a bummer that he is feeling so bad. I hope you get the word to start the new med very soon. Veri & Jaye 16 poly Steel Magnolias G'day all, Just thought I'd mention what turned out to be a wonderful night of JIA awareness on Friday- the 2010 Steel Magnolia Awards dinner here in Newcastle. It's all about recognising women who have overcome adversity and made a difference. I was a guest speaker, and though absolutely terrified managed to spruik to a captive audience of about 350 about Juvenile Arthritis (among other stuff). What's even better is that the lady who won - t Roosendaal- is a 72 y.o. survivor of JIA (diagnosed around 4 years of age). Between us we managed to make mention of JIA at least 3 times throughout the night! [] I know well, we are on the Greater Newcastle Community Forum on Health together and we joined forces to bring about the final amount of pressure needed to tip the scales in favour of starting up the Paediatric Rheumatology Service here at the Hunter Children's Hospital. Atfer me campaigning for about 3 years, our Forum hosted a JIA Seminar, and then threatened to have me chain her naked to the front gates of the hospital unless they took us seriously. (I am SO glad it didn't come to that! ROFL) OK, that's it from me for now. Been a big week. Bayly is in month 4 of a neck flare-up, about a month of left hip flare, and starting a second week with a swollen left wrist - again- it only got aspirated/injected in September! His jaws, left shoulder and knees also join in the party from time to time, but I don't know if that's referred pain. Still no word on when he will start Enbrel. He certainly bloody well meets their criteria! [] Hugs and positive thoughts for those who need 'em! Jo Bayly, 7, extended oligo Quote Link to comment Share on other sites More sharing options...
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