microscope edition 2 2011

Microscope

10 easy ways to support usFinding ways to help us raise awareness and funds for MRF

The latest news on the important B vaccine, and how to support the campaign

Edition 2 | 2011

The Meningitis Research Foundation magazine

Counting the Cost

Under the microscope

Find out how we are doing in our annual review

24hr helplineUK 080 8800 3344 ROI 1800 41 33 44

www.meningitis.org

Microscope

Further informationDisability Rights and Benefits http://drb.meningitis.org

Impact of Meningitis www.meningitis.org/impact-of-meningitis

Group B meningococcal bacteria (MenB) account for about half the cases of meningitis and septicaemia in the UK and Ireland, but due to the bacteria’s complex structure finding an effective vaccine has at times seemed almost impossible. Defeating MenB has long been a priority for MRF; we have invested nearly £4.5m in over 30 different research projects specifically related to MenB.

Therefore when a safe and effective vaccine is available, we want to see it introduced straight away. For this to happen the Department of Health has to be persuaded it is cost effective. So our Counting the Cost campaign highlights the huge financial costs of caring for those left with severe after effects, and demonstrates that prevention through vaccination is the best solution.

Although a MenB vaccine would represent another tremendous step forward, there’s still a lot more to do.

The vaccine will not cover all substrains of MenB and our new genome research aims to broaden vaccine coverage for the future.

Our new Impact of Meningitis report shows that too many of you are not getting the follow-up treatment, nor the financial and educational resources you need. MRF’s Disability Rights and Benefits website is just the first of our responses to this problem.

In Africa, due to confusion with other infectious diseases like malaria, the true scale of meningitis is under-reported. We plan to develop research and awareness projects in some of these resource poor settings.

All this requires money and the fundraising climate at the moment remains difficult. That’s why I am asking you to continue your support. We hope our ten easy ways to support the Foundation will encourage you to do something practical to help take our vital work forward.

Meningitis Research Foundation

24 hour helpline080 8800 3344 (United Kingdom)1800 41 33 44 (Republic of Ireland)

www.meningitis.org email [email protected]

www.facebook.com/meningitisresearch

@M_R_F

Midland Way Thornbury Bristol BS35 2BS Tel 01454 281811

28 Alva Street Edinburgh EH2 4PYTel 0131 510 2345

71 Botanic Avenue Belfast BT7 1JL Tel 028 9032 1283

63 Lower Gardiner Street Dublin 1 Tel 01 819 6931

We really are getting closer to a MenB vaccine for the UK and Ireland. We have high hopes that one may be licensed early in the New Year.

MenB vaccine becoming a

Dear friend,

Thank you!

“Defeating MenB has been a priority for MRF.”


Edition 2 | 2011Offices: Belfast, Bristol, dublin & edinburgh. A charity registered in england & Wales no 1091105, in scotland no sc037586 and in ireland chY 12030.

A company limited by guarantee, registered in england no 4367866. registered office: midland Way thornbury Bristol Bs35 2Bs. © meningitis research Foundation 2011

Chris HeadChief Executive

“I thought there must be others who feel the same way as me. I wanted a way to tell people about Jaxon and for friends to pay tribute to him and donate money to the charity. I also wanted a way of publicly thanking everyone who has supported us through this terrible time.”

Jaxon Roy Kelly was just two years and four months old when he died from meningococcal disease on 24 March 2011.

His mum Joanne from County Down, Northern Ireland, was keen to help MRF raise awareness and felt it was important for the family to have a page on MRF’s website dedicated to her son. Our new Remembrance Funds enable families like Joanne’s to remember loved ones and raise funds in their name.

Joanne said of Jaxon’s Remembrance Fund: “In his short life Jaxon had a positive effect on everyone he met. This keeps his memory alive and means he is still continuing to do good even though he is gone.

“Jaxon’s fund is an ongoing, practical and visible memory of our precious little boy and it will continue forever. The money raised will help spread awareness and fund research to help save lives. If just one child is saved as a result, then I will be happy.

“I am grateful my suggestion has been taken forward. It shows MRF are listening to those who have experience of the disease. He was such a special little boy. This feels like a good way to remember him.”

Remembrance Funds

Further informationYou can set up a Remembrance Fund by visiting www.meningitis.org/remembrance-funds

Read Jaxon’s story at www.meningitis.org/book-of-experience/jaxon-roy-kelly-48739

this keeps his memory alive and means he is still continuing to do good even though he is gone.

Jaxon Roy Kelly was just two years and four months old when he died from meningococcal disease on 24 March 2011.

Donate to Jaxon’s Remembrance Fund at www.meningitis.org/ jaxon-kelly

Our full range of fundraising events at www.meningitis.org/get-involved Page | 3

Further informationFind out more about Counting the Cost at www.meningitis.org/counting-cost-campaign

Read Kathleen’s full story in our online Book of Experience at www.meningitis.org/book-of-experience/kathleen-hawkins-50943

How youcan helpSupport the Counting the Cost campaign by signing the petition at www.meningitis.org/sign-petition, writing to your MP at www.meningitis.org/resource-centre

Microscope

Building on last year’s Impact of Meningitis member’s survey, the campaign shows the true cost of meningitis and septicaemia to the individual and the state.

Counting the Cost recognises that the only way that the diseases can be prevented is through vaccination. For the last ten years meningococcal group B (MenB) has been the main cause of meningitis and septicaemia in the UK and Ireland. Now a vaccine against some forms of MenB is on the horizon. Once a new vaccine has been granted European licence, it is up to government to decide whether to bring the vaccine into the childhood immunisation programme.

In deciding whether to include the new vaccine we want government to take into account the full medical costs, plus social and education costs, of the diseases’ impact.

If you live in the UK, we want you to support Counting the Cost by signing our online petition or writing to your MP.

“ I have experienced first hand the devastating effects of meningitis and septicaemia. I signed the Counting the Cost petition as it is paramount that the government acknowledge the earliest implementation of vaccination to stop this horrific disease. Meningococcal septicaemia meant that I had to spend three months in hospital and lost my legs and thousands of pounds were spent on my care as well as the disease causing great physical and emotional effects. The cost of dealing with meningitis and septicaemia is huge indeed.” Kathleen Hawkins

“ I have now signed the petition and shared it with others via my MSP Facebook page. This is an excellent campaign and I wish it the success it deserves.” John Park MSP

“During secondary school a good friend of mine was very seriously ill with meningitis, it was terrifying and we all thought we were going to lose him. After spending a long time in intensive care though he thankfully made a full recovery. Very sadly though, only two years later another friend caught the disease and wasn’t so lucky. He was buried at 16. Meningitis is such a horrible disease, even more so in that it primarily affects babies, children and teenagers, I can’t see why anyone wouldn’t support this campaign calling on the government to pursue wider and earlier vaccinations.” Poppy Dinsey

The Counting the Cost campaign calls on the UK government to introduce a meningococcal group B vaccine as soon as possible and to change the way it assesses the value of vaccination.

I’ve signed the Counting

the Cost petition... have you?

Edition 2 | 2011 Why not find out about how we support you at www.meningitis.org/helping-you

How youcan help

Further informationFind out more about Counting the Cost at www.meningitis.org/counting-cost-campaign

Read Kathleen’s full story in our online Book of Experience at www.meningitis.org/book-of-experience/kathleen-hawkins-50943

How youcan helpSupport the Counting the Cost campaign by signing the petition at www.meningitis.org/sign-petition, writing to your MP at www.meningitis.org/resource-centre

Our full range of fundraising events at www.meningitis.org/get-involved

MRF 2010-2011 Annual Review

Under the microscopeBacterial meningitis and septicaemia are diseases which can kill and disable in hours. Anyone of any age can contract meningitis and septicaemia but babies, young children and young adults are most at risk. MRF estimates that there were approximately 3,300 cases of meningococcal disease and other bacterial forms of meningitis in the UK and Ireland in 2010/2011. Throughout the world meningitis and septicaemia kill 700 children a day and leave thousands disabled.

“ As I get older I will be more likely to experience other health issues, physical ones due to the active lifestyle I am leading on my prosthetic limbs, and internal ones due to the significant medication I take each day. I am back living an exciting and fulfilling life, yet I am also still recovering and will go on doing so for many years to come.” Diana ManMRF Member on life after meningitis and septicaemia


How youcan help

MRF 2010-2011 Annual Review

Answering the need

26 research projects currently being funded to a value of £3,507,843

133 research projects funded since the charity was founded to a value of over

£16 million

1,800,000 leaflets, booklets, symptoms cards and posters

distributed free of charge

883,356 visitors to www.meningitis.org

46 members participated in Meningitis Awareness Week resulting

in 40 radio interviews, 12 regional TV news interviews and

60 news articles

8,109 helpline calls received and information and support provided

137 trained befrienders providing support for those affected

by the diseases

13,165 members of MRF with experience of meningitis and

septicaemia

The charity’s expenditure during 2010/2011 was £2.44 million

Research grants during the year 28%

Information and public awareness 29%

Support for people affected 10%

Charity governance 5%

Cost of raising funds 28%

We will never get over cayden’s death, but one day we’ll learn to live with it. We’ll always remember him as our son but our lives will never be the same again. We are shocked to the core without our son in our family. MRF member Caroline Grove on the loss of her son

Our vision is a world free from meningitis and septicaemia.

We believe that scientific research holds the key to that vision.

We fund research to prevent meningitis and septicaemia, and to improve survival rates and outcomes.

We promote education and awareness to reduce death and disability.

We give support to people affected.

Expenditure

Edition 2 | 2011 Why not find out about how we support you at www.meningitis.org/helping-you


MRF funded the largest genetic study of meningococcal meningitis and septicaemia yet undertaken, which revealed genetic reasons as to why only a small proportion of people who carry meningococcal bacteria go on to develop disease and why disease develops more severely in some people.

“this is an important breakthrough in our understanding of this infection and will be important in the development of effective vaccines.”

Professor Michael Levin Department of Paediatrics at Imperial College London

MRF funded research revealed symptoms that enabled parents and GPs to distinguish meningitis and septicaemia from milder illnesses.

“this is just what good general practice research should be – a well conducted study in a really important clinical area that yields useful, practical guidance for practising clinicians.”

Professor Roger Jones Editor of the British Journal of General Practice commenting on the results of MRF’s symptoms research

MRF’s expertise was used to full effect as part of the group preparing national guidelines on the management of bacterial meningitis and meningococcal septicaemia in children. The final guidelines validated MRF’s treatment protocol published from 1999 onward and reassured doctors that it is based on the best possible evidence.

“the guideline builds on and clarifies practice guidelines which have been widely used since the late 1990s. It provides the evidence base for the recommendations and should provide firm and authoritative guidance for junior doctors faced with management of these seriously ill children for the first time.”

Professor Andrew Pollard a specialist in paediatric infectious diseases and Chair of the NICE Guideline Development Group.

MRF connects funders to funded with research project visits, including a visit to a project at St Mary’s Hospital which is enabling us to better explain the intellectual and psychological effects of meningitis and septicaemia on children to families and doctors, and to campaign for improved follow-up care for children who have been affected.

“these types of events really do help to reinforce the value of our fund raising monies.”

Jonathan Hopper Member on our research site visits

Identifying those at risk – MRF funded research is further examining the role that genes play in the disease to develop new therapies.

“this speaks volumes about MrF and its members’ commitment to funding research – and in the current financial climate is a remarkable achievement.”

Professor Christoph Tanghead of MRF’s Scientific Advisory Panel, talks of research funding during the year.

Creating effective vaccines – At the University of Leicester, we are supporting research looking at proteins as potential targets for vaccines against meningococcal group B, the biggest cause of disease in the UK and Ireland.

Improving diagnosis – In Malawi and other sub-Saharan African countries death and disability from meningitis is unacceptably high, mainly because people arrive at hospital late in the progression of the disease. Thanks to MRF, researchers are now improving methods of spotting meningitis and looking at barriers to seeking prompt medical help.

“the report shows that there is no established patient journey for people who survive meningitis, and many members struggled to get the therapy they needed. this can slow recovery and limit the success of rehabilitation.”

Chris Head MRF Chief Executive

MRF’s Impact of Meningitis study revealed a shortfall in care for people who have had meningitis and septicaemia.

Achievements

he died in my arms, one day before his second birthday. MRF member Sabrina McNeil remembers the death of her son Dylan


A vaccine against 13 strains of pneumococcal disease is introduced in Ireland

“pneumococcal disease causes untold damage both in Ireland and around the world. pneumococcal meningitis is one of the most deadly forms of the disease; it has a higher mortality rate than other forms and survivors are more likely to have after effects, including deafness, seizures and long-term brain damage. we are delighted this vaccine is being introduced to further protect children against pneumococcal meningitis.”

Diane McConnell Ireland Manager at Meningitis Research Foundation

Improved coverage against pneumococcal disease in the UK

“the replacement vaccine covers six additional strains of potentially life-threatening pneumococcal meningitis, septicaemia and pneumonia.”

Claire Wright MRF MedicalInformation Officer

A potential Group B meningococcal vaccine candidate is submitted to the European regulator for approval

“a vaccine against meningitis B would be a tremendous achievement in the uK.”

Chris Head MRF’s Chief Executive

Vaccination starts to tackle the horrific death and disability toll from meningitis in Africa

“Introduction of this new meningococcal group a vaccine in the african meningitis belt could make epidemic meningitis a thing of the past.”

Rachel Perrin MRF’s International Development Officer

The charity’s income in 2010/2011 was £1.86 million

Voluntary donations 56%

Fundraising events 31%

Grants received 5%

Investments 2%

Legacies 6%

Income

In these difficult economic times we need help with our fundraising more than ever. We don’t want to leave the job half finished. It’s a race against time where every penny counts and your support is invaluable.

Beverley Pace MRF’s Chair of Trustees

Freefone 24 hour helpline080 8800 3344 (United Kingdom) 1800 41 33 44 (Republic of Ireland)

Midland way thornburyBristol BS35 2BS Tel 01454 281811

28 alva streetEdinburgh EH2 4PY Tel 0131 510 2345

71 Botanic avenue Belfast BT7 1JL Tel 028 9032 1283

63 Lower Gardiner streetDublin 1 Tel 01 819 6931

Offices: Belfast, Bristol, dublin & edinburgh. A charity registered in england & Wales no 1091105, in scotland no sc037586 and in ireland chY 12030.A company limited by guarantee, registered in england no 4367866. registered office: midland Way thornbury Bristol Bs35 2Bs.

© meningitis research Foundation 2011

MRF 2010-2011 Annual Review Meningitis Research Foundation

Copies of the 2010/2011 annual report and accounts, drawn up following the Statement of Recommended Practice (SORP) 2005 – Accounting and Reporting by Charities, are available on request from the Foundation’s registered office in Bristol.

You can support our work towards a world free from meningitis and septicaemia by visiting www.meningitis.org or by getting in touch



@M_R_F

www.meningitis.org


Further informationVisit our website drb.meningitis.org or talk to the helpline team by calling 24 hour helpline 080 8800 3344 (UK) or 1800 41 33 44 (ROI).

With your help we can create an online library of the genetic blueprint of meningococcal bacteria in the UK.

MRF’s ground-breaking project will reveal the complete genome sequence (genetic blueprint) of every meningococcal bug isolated as the cause of a case of meningitis or septicaemia last year in England, Wales and Northern Ireland. The project is being undertaken by a coalition of world-leading institutions in meningococcal microbiology and genome sequencing at the Health Protection Agency and Cambridge, and the home of web-based info for the global scientific community at Oxford University.

This will be a world-first. Nothing on this scale has been attempted in the field of meningitis or any other human disease.

This detailed library, which will be open to scientists across the globe, represents a dramatic change in vaccine development both for MenB and other bacterial infections generally.

We have high hopes for the MenB vaccine currently on the horizon, as it will protect against many MenB strains, but the challenge remains to make a vaccine that is effective against all of the different strains that circulate in the community.

Nobody is prepared for the impact meningitis and septicaemia can have. It can be difficult to know where to get help and support.

Those who have recovered or been bereaved can have complex needs and trying to sort out benefits or support can be emotionally draining and we would like to try and help relieve that burden a little.

A new MRF website, the first of its kind, contains a quick online assessment where you can be supported as you navigate the benefits system and get information on accessing services and equipment you may not have thought of. There’s also a short guide to benefits and services.

Lydia Cross contracted Hib meningitis and septicaemia in November 2003 at the age of two, resulting in bilateral amputations below the knees and permanent hearing loss at high pitched frequencies.

Her mum Jodie said: “Following Lydia’s illness, we didn’t know where to start seeking information about equipment and benefits to which she might be entitled.

We found the whole process daunting, time consuming and lengthy, with lots of forms and telephone calls, which was very frustrating. This MRF website is a great starting point for families who find themselves in a similar situation and the helpline team will help you access the correct expertise and find out exactly what can be done to make life easier.”

MRF Meningococcus Genome Library

Disability Rights and Benefits website

this mrF website is a great starting point for families.

How youcan help

We couldn’t fund this work without your help. If you would like to donate to this research, just use the form on the back page.

The MRF genome library will give scientists the complete picture to do this.

A unique resource, the genome library will be invaluable for the evaluation and implementation of new vaccines.



@M_R_F

Page | 9

How youcan help

students at Bath University distributed literature at a health awareness event and gave away free cupcakes for every student who downloaded our iphone symptoms app.

Annette Kelly raised an amazing £5,500 by looking after collecting tins in and around Largs in scotland and collecting at supermarkets in the area.

ruth and nigel potter from pontypridd raised £100 for mrF at a car boot sale and are now encouraging their friends to donate stuff for the next one.

pupils at st patrick’s college in dungiven, northern ireland collected 120 mobile phones to raise money for the Foundation.

MicroscopeMicroscope

Why not make sure your local GP, nursery, university or library is regularly topped up with posters and literature. Or do a talk at your local school, university or workplace using one of our ready-made presentations.

Ask your local shop or pub to have a collecting tin. Or you could collect in your local town centre for a day. Contact us and we will tell you how.

Why not have a clear out and get rid of all those unwanted items by doing a car boot sale or sell them on eBay and donate the proceeds to MRF.

Recycle your old phones and ink cartridges. Just ask us for envelopes and pop them in the post. These days even your car can be recycled! If you have an unwanted car taking up the driveway why not donate it at Giveacar’s site? Remember to nominate Meningitis Research Foundation as your chosen charity.

Donate your car – www.giveacar.co.uk

to support MRF

Why not find out about how we support you at www.meningitis.org/helping-youEdition 2 | 2011

How youcan help

Get involved! For more information contact your local office, Sue Mennear in our Membership Department on 080 8800 3344 (UK) 1800 41 33 44 (ROI), [email protected] or log on to our website. We look forward to hearing from you!

eleven year old Benjamin Gilhoolie raised over £400 by giving up chocolate for

three months.

derek dalton invited other residents of Listowel in ireland to travel back in

time to the days of mohair jumpers and headbands at an 80’s disco which

raised €2,600 for mrF.

parents and staff at scoil oilibheir in West dublin raised €1,200 at their cake sale following the death of a pupil at their school.

“ It was wanting to know more about pneumococcal meningitis (that) drew me to the Book of Experience. Others’ stories have helped me and sharing my experience with others who have been through a similar experience has helped me personally try to live with this.” member Andy niblett from midlothian wrote about his experience after he lost his son Jacob to meningitis.

Antonio marques from Berkeley in Gloucestershire asked his spinning class to raise money for mrF after a class member’s child recovered from meningitis. they raised over £750.


If a family member is in the Scouts, Rotary Club or a football team why not suggest they raise funds for MRF? Or nominate us as your employer’s Charity of the Year. Or ask your child’s nursery to raise funds while kids get Boogie Fit.

Boogie Fit – www.meningitis.org/boogiefit

Getting sponsored for an activity has never been easier. On-line sites like JustGiving and JustTextGiving mean it’s simple for your friends, family and colleagues to give you their support. You could give something up yourself or why not encourage your children to give up their Nintendo DS for a day.

Just Giving – www.justgiving.com

MRF has a range of Christmas cards which you can buy to raise money for the Foundation. An order form is included in this edition of Microscope. Do your festive shopping online through the easyfundraising site and you raise money for the Foundation. All your favourite retailers from Amazon and Argos, Waitrose and Waterstones are there and it won’t cost you a penny more! Just register as a supporter of Meningitis Research Foundation and we will receive a cashback donation of up to 15%.

Christmas shopping – www.easyfundraising.org.uk

Support others by sharing in our website Book of Experience. Let us know if you’d like to share your story to help with one of our media campaigns.

Book of Experience – www.meningitis.org/book-of-experience

Join our Facebook page to hear about all the different ways other members and supporters are getting involved in our work, help us raise awareness and tell us what you are doing! Like our page to receive updates, share our posts with your friends, let us know what you think by commenting and write on our wall to tell us what you are doing to support MRF.

Facebook – www.facebook.com/meningitisresearch

Direct debit is the easiest way to support the work of the Foundation. You can set up a direct debit once a month or to mark the anniversary or birthday of a loved one. Why not make a one-off donation to help one of our ground-breaking research projects? Either way there’s a form for you to use on the back page or you can log on to our website.

Make a donation – www.meningitis.org


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microscope edition 2 2011

Documents

menb vaccine

effective vaccine

orgimpact of meningitis

cases of meningitis

vaccine coverage

substrains of menb

true scale of meningitis

important b vaccine