Battle for Breath BFL Campaign

I wrote to my MP yesterday about this. It felt good!!!

Perhaps you've already done it? If you scroll down the page you'll see a link about mailing your MP. Let's hope I get a response!!πŸ˜€

blf.org.uk/take-action/camp...

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67 Replies

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  • Done! Please everybody take a couple of minutes to do this.

  • Yah! Great πŸ˜€x

  • Thanks littlepom !!

  • Done. It's really important.

  • Thank you Watfordgirl :-)

  • You're welcome, Ben. I'm surprised BLF haven't emailed everyone on their email list asking for support. I didn't know about it till I read GeorginaS's post.

    Have a good day.

  • From what I remember (and my memory is a bit hazy today!) an email was sent out a few weeks ago when it was launched, but I agree, the more awareness we can raise, the better!

    Have a good day too :-)

  • Hi Ben, I never received an email about it so maybe it's time to head to the mailing list again.

  • Thanks for this - I'll mention this to our team who put the emails together

  • thanks Ben. As you probably know, I have bronchiectasis, for far too long one of the orphans of lung problems. The failure of successive governments to address all lung conditions because they are not 'sexy' or deeply emotive like cancer or have powerful people to speak for us is a disgrace. The only way that we will get our voices heard and hopefully shame them into taking action is for all of us exhausted, debilitated, feisty characters to stand up and SHOUT together! Go for it BLF. You carry the banner and we will march, stagger, drag ourselves behind you.

  • If bronchiectasis is the orphan of lung diseases then OB the orphan of an orphan. OB? Did I hear you ask? Quite....

  • bpold.co.uk/condition04.php am i going in the right direction Katinka?x

  • Close but me and the others here have the "grown-up" version. Fibrotic strangling of the bronchioles. Caused by damage. Some here have it as a result of autoimmune disease, RA and Lupus. Mine seems to be "purely" fibrotic, ie no inflammation, hence no medication. ☹️

  • i just knew you would be in the 'grown up' sector.(smiley thing)Having worked in the communications industry where fibre and optics where the buzz words and after Cecilia's demise and meeting nice people like yourself suffering i am beginning to hate the word 'fibre' grrr........ski

  • Not keen myself. Can't be budged from lungs.

  • still quite keen on the 'optics' word especially those optics that dispense stuff that would give me the equivalent of your syncope episodes if i had too much.....xx

  • I said that bronch is One of the orphans of lung conditions. I am well aware that OB, IPF and many other conditions are treated just as badly. This is why we need to stick together and make our voices heard.Please read my posts properly and don't get cross with me. I'm on your side.

  • I didn't doubt it. I was only joking. Most people haven't heard of these conditions.

  • 😍

  • Littlepom... I've changed the words to reflect our situations... All we need now is Paul McCartney and lots of voices to sing.

    Any volunteers?

    We could be number 1 in the charts by Christmas! Here's my version!

    "We All Stand Together"

    Win Or Lose, Sink Or Swim

    One Thing Is Certain We'll Never Give In

    Side By Side, Hand In Hand

    We All Stand Together

    Play The Game, Fight The Fight

    But What's The Point it's to breath just right!

    Arm In Arm, Hand In Hand

    We All Stand Together

    Keeping Us Calm In Our Fight

    La La La La

    Wake In The Night

    We'll Get It Right

    Win Or Lose, Sink Or Swim

    One Thing Is Certain We'll Never Give In

    Side By Side, Hand In Hand

    We All Stand Together

  • maybe Paul might be persuaded to help us re release it in this form to raise the profile.

  • If you could see me now littlepom I've just done a standing ovation in front of my PC :-)

    Totally agree with your post, thank you for this.

  • I didn't get one either.

  • Great x

  • Thank you GeorginaS !!

    If you do get a response, please do forward it to our campaigns team at press@blf.org.uk :-)

    Thanks for your support,

    Ben

    BLF Admin

  • Will do x

  • This was on BLF Facebook page a few weeks ago, I did it and shared it with a Facebook group I belong too.

  • Thanks Nottobad !

  • Done xx

  • Yah! Great!

  • Done with pleasure.

  • Great x

  • Just sent. I edited it a bit as I know our MP quite well having campaigned for her in the GE (first Labour MP in Canterbury for over 100 years). She's also now sitting on the Women and Equalities Select Committee and lung disease is an equalities issue for sure, if not specifically relating to women.

  • Fantastic news! Well done x

  • I already did it when my story about working went live as part of the campaign. But all I had back from my MP was a meaningless reply written by one of his minions, but I tried.

    So, who has Paul McCartney's email address?

  • No idea but I'll look into it πŸ˜€

  • Done!

  • Done! Guess I'll get a standard response from my MP.

  • Done, let's hope it does some good. Xx

  • Wow! What a wonderful response. Thank you x

  • Good one, done it.

  • Thank you for the opportunity to sign and spread the word.

  • Great πŸ˜€

  • Done.

  • Great πŸ˜€

  • I included a bit about the road near me which has three schools and a college and gets choked up with traffic every morning and afternoon in term time, as you suggested including a personal bit.

  • Excellent! Well done πŸ˜€

  • I'm willing to help out but it tells me can't find my zip code. I'm assuming it's because I live in the states. I'd be happy to donate.

  • Hi, it's not a fund raising it's a campaign to parliament so UK citizens only. :)

  • Done

  • Fantastic

  • Ok...put a tick against my name, done! Good one littlepom !!

  • Excellent. Lots of people have joined in πŸ˜€

  • Done let's see what MPs reply have a blessed day

  • Thank you x

  • Yes done !

  • Great πŸ˜€

  • Just done it.

  • Many more people now. Thanks x

  • Me too (on FB)

  • Thank you x

  • Just sent this to my MP & posted on Facebook. Hopefully by friends will do likewise.

  • That's brilliant. Thank you x

  • Done

  • πŸ˜€πŸ˜€πŸ˜€πŸ˜€πŸ˜€thank you x

  • Done! Let's see if Nicky Morgan will reply πŸ€”

  • Done in just 2 minutes

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