I thought it would be nice for you all to see what I am doing for your charity each week, fighting hard to make our invisible, visible, so welcome to my blog.
Do get in touch if you have any ideas of things we could or should be doing, chances are we are already on it, but your feedback is extremely important to me.
Monday 23rd September –
I knew today was going to be the start of a manic week. We have recently received a donation which enabled us to take on a social media consultant, and I am sure you are witnessing on our Facebook page what an excellent job she is doing.
Unfortunately she is doing such a good job that I have come back to my desk today with lots of new orders and new members joining our community, which of course is wonderful, however it means I know I will be here for quite a few hours past 5pm!
It is a really busy time, I am traveling quite a bit to get to conferences so that I can make sure I am up to date with all the latest medical information to bring back to you. We also have our one day conferences when I get back, so I am busy planning for those.
I also need to hand our 40 page edited completed newsletter to our printers by Sunday, so far I have not typed one word! Rest assured it shall be done, as it always is, but it is just me that sits there typing out every word, designing the pages and putting what I think you will all want to read inside its pages. It is all there in my folders, I just need to make it all look pretty!
Tuesday 24th September –
I am leaving on Thursday for the Nordic EDS conference so I have lots to do the next few days. I also have a rheumatology conference in Edinburgh next week so today I spent putting together 150 bags to hand to medical professionals, with the help from our lovely chair Janine.
I also needed to send out all your dietary requirements (and as an EDS bunch you can imagine there are lots of them!) to the hotel for our one day conferences, so I am busy going through all of these as well.
I am really excited about some new products we are going to be bringing you in the next few weeks, I have been working with our merchandise provider on some great ideas, I can’t wait to show them to you when they arrive!
Wednesday 25th September –
Today was my last day in the office till Monday, so I am desperately trying to process all the orders, new members and conference bookings before I go.
I am collating all the last details for Fragile Links, as I will be spending late nights in the hotel in Sweden editing it all! It can then be proof checked and printed to send out to you all on the 15th October.
I had two grants to apply for today, and they have sooooo many pages!! Its all worth it though if we can get some funding to bring you what you all need.
Thursday 26th September –
I am tired today! But I have been up since the crack of dawn, travelled to Gatwick, which took about 90 minutes and now I am waiting to board my plane to Stockholm, where the Nordic EDS conference is being held.
The agenda looks really interesting and there are speakers from all over the world going, including Dr Brad Tinkle from the States, who I always enjoy seeing.
It is going to be a busy weekend! As soon as I land I will be ordering room service and will be up for hours editing Fragile Links.
Friday 27th September –
Good Morning Upsalla! Sweden is beautiful and I have had a great first day at the conference. Today was for medical professionals, and there were some really interesting discussions.
Meeting Dr. Brad Tinkle at the Nordic EDS conference in Stockholm.
The Nordic EDS Conference
I am exhausted and I do wish I had a weekend to chill out; but this goes conference goes on till Sunday evening! I will land on Sunday in Gatwick at 11pm, then hopefully be home by 1.30am. I will then be at my desk for two days, before I get back on a plane to Edinburgh, back just in time for our conference in Daventry.
I can’t wait to see everyone that is coming; some faces I know and some new. It is always nice to see our EDS family expanding.
I have checked in with the office today and I know I have lots of phone messages and orders waiting for me! I hope you have all had a wonderful week and are feeling as well and happy as can be.
Goodbye for now – till next week
Lara 🙂
larabloomeds 
Thank you for visiting my home country!
Hi i suffer with EDS although not really recognized locally in Hackney. More information needs to be given to people in the benefits sector as claiming disability benefit is hard as there own medical staff are to access you who have know idea about the condition.