New FL Foundation launched today

FormerMember
FormerMember
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Hi all,

I thought I would share this as some great news for all those suffering with FL

https://www.theflf.org/

paul

  • I am still wondering what’s great about it ?

    It will provide some people with employment I suppose.

    www.gov.uk/.../get-funding-to-start-a-charity

  • FormerMember
    FormerMember in reply to Doh

    Er, yes.

    this is a dedicated charity for raising money for FL.

    i personally am delighted by this and hope that this could eventually lead to a cure for me in the future.

    paul

  • FormerMember
    FormerMember in reply to FormerMember

    ...and this whole campaign has had a lot of media coverage and has already raised awareness of this disease amongst some of my own friends who I maybe have never felt comfortable  discussing my disease directly with.

    i guess some people can only see the negative in everything, I’m the opposite and look for positives in everything.

  • I had a look at the website.  Seems to be about raising funds for research, which means big money and international teams.  This may be a bit more complicated after Brexit, if I dare raise such an ugly subject in this polite company!   I'm not sure what a further charity will do, especially if it's a small operation.  I looked at the Board and staff listed.  Board is largely finance people, but Richard Harrington, a former MP, ex Dept of Work and Pensions, is a supporter of homeopathy on the NHS, which is curious.

    What'll they do that Macmillan, Cancer Research and Lymphoma Action aren't already doing?  OK, it's follicular and that's the most common sort, so maybe it has a population who will contribute funding based on the specific type of lymphoma.  There was also a mention of complementary therapy, which worried me a bit because I know some such therapists whose costs were hard to justify, let alone their outcomes, when funding was made available from charities.

    Not sure what Good Things they have in mind for us, but like Paul, I look for the positive! 

    Cecren