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L-W-O Community

For those living with Primary, Secondary & Paediatric Lymphoedema Online & in the Community

Sept 2017

September was a busy month.  I have been a member of LSN for approximately 4 years but have never attended one of their conferences, this year, Tuesday 5th September, I was able to go.  The trains past Euston were still not operating properly so thanks to my ever-patient husband he decided he would drive me.  The weather was horrendous with heavy rain.  On the out skirts of London, we should have been 10 minutes from our journey's end.  However, we somehow missed the turning and instead of being in SW3 we ended up in Hammersmith.  Joy of joys.  It was a good job we were early and after seeing quite a lot of Hammersmith from the car we finally arrived at our destination about five minutes late.

The conference was interesting and it was lovely to catch up briefly with Karen Friett and meet Anita Wallace LSN's Chair, Philippa Laughton, LSN trustee and a member of    L-W-O.  I also met up with L-W-O member Catherine.  I had some lovely conversations prior to the AGM and one of the most interesting was with Jed Bailey, LSN Trustee and we talked about the essential benefits of social media for organisations like LSN and L-W-O.  Unfortunately there is never the time to really share ideas and experiences but it was interesting.

There was a great lunch and a few exhibitors.  The best part for me was an Audience with Dr Kristiana Gordon and I could have listened to her all afternoon.  Dr. Kristiana, talked about the latest research surrounding Ubenimex medication and various other lymphatic malformations including the gene studies with children.  She also reiterated that Ibuprofen and Voltoral were an absolute "no, no, no" for those living with lymphoedema.  I enjoyed my day and I am glad that this year I could attend.

Thursday 14th September, was our support group in Coventry and sadly the speaker, was unable to attend.  I had been doing lots of research on Foot-care, so I put together a brief talk and then generally we had a chat over a cup of tea.  In the evening I attended a WCC Councillors Grant Fund seminar, this was interesting an I was able to catch up briefly, with Scott Harrison who had guided us through our Constitution and non-profit set up.  Plenty of ideas on fund-raising for the future, if only I have the time.

The 18th September, Jayne one of our trustees and I met to discuss the best way to set up a database with a view to put those members of L-W-O in touch if they wish.          L-W-O was invited to attend the Cancer Awareness event at The Hummingbird Centre, Coventry, on the 28th September.  Martine and I set up our information stand.  The event was great for networking, sadly, it was not something that inspired the public.  Macmillan, dietitians gave an interesting talk on eating healthily through cancer treatment and beyond.

Finally, L-W-O were invited to The John Lewis Community Hub on the 30th September, by our friends from MC4BC this was a fabulous day for networking although rather light on public footfall.  It was great to meet Michelle, who is now part of the L-W-O team and has set up and runs our Twitter account.  Martine came along and it was lovely to spend time with her and Michelle.  I like to think we have made some new friends for the future in the following as we chatted to the other exhibitors.

As you can see September was a busy month.

The L-W-O Support Group is growing steadily our Community Page is now averaging a reach of 1200 per week and our Children's Support Group has 41 members, our website is also averaging 1200 viewings per week.


Michelle, Martine and Gaynor at The John Lewis Community Hub, Birmingham

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