The sky’s the limit

4th August 2016

It’s funny how things develop sometimes. As a medical charity we of course followed the story this week about the National Aids Trust court case

Chief Executive blog August 2016

Given all the recent coverage of the MenB vaccine, the Joint Committee on Vaccination and Immunisation decision not to recommend extending usage and our ongoing campaigns to secure the use of this vaccine for a wider age range, anything that impacts on health service decisions captures our wider interest.

What I hadn’t foreseen though was that national television would be interested in our views on the outcome of this case, but that’s what I found myself doing earlier this week in an interview with Sky News.

Give Children a Voice

Of course, there are major differences between the situation with Prep and the Men B vaccine, and going to court is not an option that we are considering. But it gave us a platform to express our disappointment on the recent JCVI recommendation, renew our calls for Men B to be offered to all under 5s on the NHS and flag up our Give Children a Voice letter to drive this campaign forward.

If you and your family haven’t signed up to this yet, you can do so here. We’ll be taking the letter and signatures to Health Secretary Jeremy Hunt next month.

All Party Parliamentary Group

Whilst on Westminster matters, I’m really pleased that our plans for an All Party Parliamentary Group on Meningitis are progressing well.

We’ve had meetings with our local Stroud MP, Neil Carmichael, and he’s very kindly agreed to take the lead on chairing this – thank you Neil - and we look forward to taking it forward when Parliament reconvenes in the autumn. Watch this space for further details and developments. 

Garden growing awareness

I was delighted to visit our garden at the RHS Show at Tatton Park in Cheshire too and have the opportunity to help raise awareness alongside some of our wonderful volunteers. Although this garden was not on the same grand scale as its Chelsea forerunner, designer John Everiss had done an amazing job in just a few hours to create a moving and beautiful garden, which struck a really emotional chord with the many visitors who stopped by. This was largely thanks to the brilliant sculptures of young meningitis victims, which are so eye-catching and such a talking point.

Thank you to him, Laila’s Fine Foods who sponsored the garden, the many volunteers who handed out signs and symptoms cards and all those who stopped by to have a chat. It’s been a really innovative and engaging way to raise disease awareness as part of our special 30th year.

Stepping out on the Five Valleys Walk

Back at the office colleagues are hard at work on fine tuning the arrangements for our flagship sponsored walk – the Five Valleys Walk; checking the route, sorting out volunteers for the checkpoints and doing the myriad tasks necessary to make sure everything works like clockwork on the day. All we need now is for the great British weather to be on our side – I’m sure it will be as it has been in recent years.

I’m looking forward to my first Five Valleys Walk and I hope many of you will join us on the day. Make a note of the date – Sunday 25 September and do join us if you can. You can sign up here. The special thing about the Five Valleys Walk of course, apart from the beautiful Cotswold scenery, is that you can go for as long (up to 21 miles) or as short (just a couple of miles) a stretch as you want and then get a free bus back to where you started. 

Join us for a Family Day

Our Family Days are heart-warming occasions and a great way for those affected by this devastating disease to join together, share their experiences and, most importantly, have fun.

Enjoying a fun day with your family may seem a small thing, but when your family has lived through the trauma of meningitis together, it means so much.

Registration has just opened for our Family Day in West Sussex on Saturday 10 September so, if you’d like to come along we’d love to see you. You can register and find out about our other forthcoming events here

Thank you for your ongoing support.

Liz Brown, Chief Executive

  • Meningitis Now - Glass test for rash

    Don't Google a rash

    Following potentially fatal advice given by Jeremy Hunt this weekend we are urging parents to seek medical advice if they are concerned about a rash

  • Our meningitis story

    Wall of achievement, inspiration and hope

    We’re celebrating thirty amazing years of the meningitis movement in the UK this year by asking you, our supporters, to help highlight the achievements and inspiration of the past three decades on an online photo-wall hosted on our website

  • Meningitis Now fundraising event - London 10,000

    London 10,000 top 10

    This year we have been lucky enough to secure FREE places to the iconic London 10,000 for anyone wishing to run for us

  • Meningitis Now Chelsea Garden statues scan - meningitis survivors

    Meningitis survivors take centre stage in Chelsea Garden

    Four young meningitis survivors will take centre stage in our 30th anniversary garden at this year’s Chelsea Flower Show