Guest guest Posted April 27, 2007 Report Share Posted April 27, 2007 How exciting Jo!!!!!!!!!!! Congrats, congrats, congrats!!!! keep up the awesome work.........DonnaSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2007 Report Share Posted April 27, 2007 Wonderful work Jo! You are an inspiration to us all in how to be an advocate and get the word out. Keep up the good work! Michele (19, spondy) From: [mailto: ] On Behalf Of Jo & Grant Sent: Friday, April 27, 2007 4:54 AM Subject: finding Funding I want to share my absolute excitement with you all. This afternoon I had a meeting with my local Member of Parliament (in NSW, Australia) about what State Government funding is available for JIA Clinics locally. And after a supposed 15 minute meeting turned into over an hour, here's what's happening... Lucky for us, perhaps, our MP has recently been diagnosed with RA at age 38, and is very sympathetic to those with the disease- especially kids (he is a father, too) He said he is almost embarrassed about having it, and doesn't tell anyone unless he has to. (I encouraged him to speak about it, as we need to make more people aware!) I made a presentation of some of the media coverage we have managed to gain for JIA awareness, along with some estimated combined costs of c.$10,000 p.a. for a visiting Paed Rheumy and local Hospital staff (eg: OT, Physio, Social Worker, Dietitian), and he said we should be able to get double that, easily! He's also going to table the topic of JIA in State Parliament when it resumes shortly, and ask why there isn't funding in place for JIA research. He believes that if he presents it to all the State MPs at once, they can look at finding the funding for such a Clinic in major regional areas of NSW. He also agreed that there is need for a National database, so that we can estimate just how many JIA kids need services, and says we can also lobby the Federal Government for money for that. Also lucky for us, the bloke in charge of NSW Treasury, is also the Member for the Hunter, and so our MP is going to ask him to support a cause in his own backyard. And he is going to arrange a meeting with the rest of the local MPs, to get a joint approach for the region. He also is going to raise the issue in Sydney media, to get more awareness for the disease itself. From here, he wants me to join him at a meeting with the CEO of our major regional hospital, ASAP, and we'll go from there. In short, Yay!! Now, I know, as he pointed out, that these wheels may turn slowly. But at least they are turning! Jo Bayly, 4, extended oligo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2007 Report Share Posted April 29, 2007 -WTG Jo... thers no stopping you, you ROCK!!!!! hugs Helen and (9,ssytemic) -- In , ajaoky@... wrote: > > How exciting Jo!!!!!!!!!!! Congrats, congrats, congrats!!!! keep up the > awesome work.........Donna > > > > ************************************** See what's free at http://www.aol.com. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2007 Report Share Posted April 29, 2007 Aw Helen, I dunno about that. I usually just keep striving for some sort of success, since we can't cure this bloody disease beating up our kids. But today, with my darling little boy in tears 'cause his neck hurts to much getting dressed for school, and having to take a step-stool in for him to be able to use the toilet ('cause they havne't built a step yet)....I am feeling stopped in my tracks. Just want to crawl away and cry for a while. I'll be better again tomorrow, I'm sure. And I'll keep fighting for whatever win I can score. Jo Bayly, 5-tomorrow! extended oligo > > > > How exciting Jo!!!!!!!!!!! Congrats, congrats, congrats!!!! keep up > the > > awesome work.........Donna > > > > > > > > ************************************** See what's free at > http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 Jo and gang....I crawl away and cry myself when needed. Well ok, maybe I don't crawl as getting on my hands and knees could prove horrifying to myself and any on lookers but on many occassions I have limped away, holding onto walls or anything near, and cried .....and you know what it is ok!!!!!!!!! Because it is when I feel like crying or I am crying that I call on "me" and I "STAND"................. Cause when push comes to shove You taste what you’re made of You might bend ‘til you break Cause it’s all you can take On your knees you look upDecide you’ve had enough You get mad, you get strongWipe your hands, shake it offThen you stand, then you stand Its ok to cry, to get mad but its also ok to say I have had enough now what do I do and its often not simple but hang tight and hang tough my friend!!!!!!!!!!!! and always find a smile!!!!!!!!!!!!!!!!!! Donna See what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2010 Report Share Posted March 22, 2010 To all Big Guys, Old Guys and Just Plain Guys, You may want to check out this website to help with funding for your CML drugs. http://themaxfoundation.org/News/FullStory.aspx?choice=177 FYI, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.