Monday 24th February
I spent yesterday at two families houses filming in Surrey for our documentary, so I am feeling tired today. But that was officially our last day of filming! Fingers crossed it will be fully edited in the next month and we will have full details of how you can see it soon.
This week is an important one in the Rare Disease calender, it will be Rare Disease on Friday and we have been busy promoting the occasion at EDS UK. I will be attending a few different events to help raise awareness this week. In between all that we have lots to complete and looming deadlines! We are busy tying up all the details of the Area Coordinators ready to announce next week to everyone in the community, we only have a few positions left now to fill, do you think you could help us?
Tuesday 25th February
Today we are busy finalising everything for our May Ball. It is so exciting as we have confirmed that the legendary singer from the days of the Rat Pack will be there, Buddy Greco, sharing his stories of his days with Marilyn Monroe and Frank Sinatra, and singing his classics like Lady is a Tramp. We will also have a 13 piece Big Band singing hits from the Golden Age of Hollywood, keeping in the theme of our evening, which will be held at Shepperton Film Studios. It is going to be an incredible evening of glamour and awareness raising, will you join us? Tickets and more information can be found here on our website.
Wednesday 26th February
Today I am heading to the House of Commons for the parliamentary reception for Rare Disease Day. I always get excited when I know I will be going to Parliament, after just studying Global Politics for years, it brings out the geek in me! I was there an hour early due to security being much quicker than usual. The security guard asked if I would like him to take me to the galleries whilst I was waiting, I thought sure, I like art. So I followed him up several flights of stairs (not the best for me!) and realised there was noise getting louder and louder, thinking how strange that was for an art gallery! Once we reached the top I walked through a small door after handing my phone to a security guard, and realised this was no art gallery – I was in the gallery above the House of Commons watching David Cameron right in front of me talking about the flooding!! I was in my element and had never been so happy to be early for something in my life! The reception was really good and I met lots of interesting people, there were some exciting announcements and things are looking optimistic for the world of rare diseases. Find out more here.
Thursday 27th February
We recently put out a search for someone to help us with The Information Standard that we are going to be working on for the next year and we had the lovely Cathy Collier step forward to help us complete the project. Today we both went through the process with someone from the Standard and I am really excited to embark on this project, in just 12 months time EDS UK will be proud to bear the Information Standard mark across all our content. We are very grateful to Cathy for helping us get there.
Friday 28th February
I was supposed to be at Royal Holloway today for Rare Disease Day, but alas my EDS reared its ugly head. I think the busy few weeks have all built up and I had a bad POTS attack so am staying horizontal today – still working from my laptop though! Hopefully a good rest will make me feel better – ready for another busy week on Monday! Have a good weekend everyone 🙂
Lara Bloom
larabloomeds 