Dear Friends,
My calendar tells me that the 22 September is the first day of Autumn and so I feel summer is definitely on the wane! I hope that during warm and sunny days you have been able to experience some fresh air and that shielding yourselves and families has been a success during the lockdown.
September is Pulmonary Fibrosis Awareness month with the world Idiopathic Pulmonary Fibrosis week falling on the 12 to the 19 September. Staff at Action for Pulmonary Fibrosis have been busy promoting awareness and fundraising with a 'Create a Stir' campaign and details can be found on their website http://www.actionpf.org It is so unfortunate that we cannot meet to enjoy a 'brew' but as we do have quite a healthy bank balance, thanks to your own generosity at our meetings and also to our treasurer David, I would like to suggest that we send a generous donation to the APF charity. Let me know what you think - we have £600 plus !!! in our account.
Template letters have been created by APF for us to use and send to our Assembly Member and also our own GP.s You will need to go on line to access them and personalise them… .such letters all help to raise awareness of the difficulties that patients and their families have once a diagnosis has been made. The importance of timely and correct medication for everyone is also stressed instead of the delay that many patients' experience.
Do you remember that last year we were told of 2 awards for research into causes of IPF? Well, on the 2 September, a very interesting seminar (live webinar) was given by researcher Dr Richard Allen entitled 'Does DNA hold the key to understanding IPF?' The talk has now been put onto the website for us all to access… The language is simple and uncomplicated and gives hope to finding medication that will have a positive health effect on patients. We know that not all antifibrotics suit everyone. If you know of anybody in our group who relies on the post please advise them to go to a local library where they can read all the information on the website.
I am wondering whether we could consider meeting up in December for a safely distanced cuppa and a mince pie? The dining room at the Canolfan Centre could possibly accommodate us… I'll make some tentative enquiries.
I look forward to hearing from you with regards to a donation and possibly meeting up in December. Keep well and safe.
Yours in Friendship.
Maggie x
Information provided by Action for Pulmonary Fibrosis (APF) is not a substitute for professional medical advice. It’s intended as general information only. APF is not responsible for any errors or omissions or for any loss or damage suffered by users resulting from the information published on actionpf.org.
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