thanks that's brilliAnt much appreciated x You did Huggie, cheers, today I was asked I must have received my transplant because I was looking so well, when out Hat shopping for Justy's wedding on Wednesday.
That links not working at the moment I've bumped it and shared on FB anyway, but don't know what the problem is.
Forgot to post this at the beginning of the year. The mycharity.ie page had a length period. In the 2+ years that we had the page setup we racked up a nice amount ( also Rafa helped a lot!) Dear Justin, Your fundraising page (http://www.mycharity.ie/event/friendsofpam/) on myCharity.ie in aid of Irish Lung Fibrosis Association has completed. On behalf of Irish Lung Fibrosis Association would like to thank you most sincerely for the €1,045.00 online amount and €6,534.00 offline amount that your fundraising efforts have raised for us. It is only through the generous support of fundraisers like yourself that we can continue on our good work. We hope you have enjoyed fundraising on our behalf and we sincerely hope that you might consider doing the same event or indeed another event for us again in the not too distant future. Thanks and best regards, Eddie Cassidy Tempted to set up another and leave it open?
Just wanted to let you all know I am going to Leinster house in the morning, It is IPF awareness week, and I am going with Irish lung fibrosis members I will get the chance to meet and talk to ministers and TD's about living with fibrosis but more important to talk about transplants and organ doners, I sincerely hope I can help to make changes In the law. I am a determined person as you guys are well aware, so I hope It will be of benefit not only for myself but hopefully for many others, I will let you know how I get on.
Not exactly it's a pre arranged meeting but I had got the chance to put forward certain questions that will be discussed in the dail, I can't say too much. But it's a very big step in the right direction
Pam, the missus just rang our local TD that did some lobbying for you in the past when you needed to get on a new very expensive drug that was not covered by the medical card scheme. Unfortunately he won't get to meet you tomorrow as he is away on other business, but at least he was rang and made aware of your group going into the Dail tomorrow. As always best of luck in your all your valiant efforts to raise awareness of your situation and that of others.
Today I was in Leinster House, it was the launch of the patients charter for IPF, we met with senators and ministers TD's it was very constructive talks regarding lung fibrosis transplants and care, Questions have been raised in the dail, from Derek Keating about organ transplants and trying to get a option of a new policy for op out, also cross border organ donations, I personally want to thank Derek for taking up questions on my behalf and patients with IPF We are also working towards transplants for patients regardless of age, and oxygen therapy given to all those that need it The charter has six points 1. Early accurate diagnosis 2. Clear concise info about IPF in plain language 3. Access to appropriate medicines and oxygen 4. Early referral to Pulmonary Rehab exercise programs 5. Early referral to nation lung transplant unit for lung transplant assessment, with minimal emphasis on age 6 access to social, practical and emotional supports I am delighted with the progress being made a good turn out of TD's and Fergal Quinn. great hope for the future thanks to everyone that have signed the charter it's not only for Irish it's ALL OF EUrope.
You are a great fighter Pam hope something good comes out of you and your organisation's visit to Leinster House today.
He is I have been friends with Derek many years, especially when I was involved with Chernobyl Kids Derek was our chairman but put in huge work, he really is sound only big problem he is a manc !