News from National Office

On this page you will find information about help you may be entitled to, news about research, advice on support available etc that we have received from the MNDA National Office.

Have a look through, and then check back regularly to see if anything could help you, or someone you know.

MND Association funded study finds new clues to genetic causes of MND
A study, part funded by the MND Association using money raised by Walk to d’feet MND, and in collaboration with the ALS Association and other funding bodies, has found another genetic mistake that can cause a rare, inherited form of the disease.
 
This is the third MND Association co-funded research project that has resulted in the identification of a previously unknown genetic cause of MND.
 
The new research suggests that mistakes (mutations) in a gene called ‘D-amino acid oxidase’ or ‘DAO’ for short, is the cause of MND in a family that is affected by a rare, inherited form of the disease.
 
By comparing these results to other families with the inherited form of MND as well as people with the sporadic form and people who do not have the disease, this specific genetic mutation could not be found. The results however, do provide further clues as to the possible underlying causes of all types of MND.
 
Dr Brian Dickie, our director of research development, says: "Identifying definitive causes of MND, no matter how rare, is of vital importance. It will allow scientists to compare one form of MND with another, to more rapidly identify events that dictate whether a motor neurone lives or dies, no matter what the original cause of the disease is. It serves as a springboard for much greater understanding of MND - and it is through this understanding that effective treatments will be developed."
 
 
What does this research mean to somebody affected by MND?
Mutations in the DAO gene are extremely rare and so far, have only been identified in one family that is affected by the inherited form of MND. This discovery will help us to gain a deeper understanding of what causes all types of MND. Investigators believe that discovering the genetic cause of familial MND will lead to a better understanding of what is going wrong in the more common, sporadic form of MND – as sporadic and familial MND are clinically indistinguishable, scientists believe that the mechanisms underlying both types of disease might be similar as well.
 
 
Further information
You can find out more about this research news on our website at: http://www.mndassociation.org/news_and_events/our_news/new_clues_to_mnd.html. For further information about this research news please contact our research development team on 01604 611880.

The Supply of Rilutek - (December update)
We are continuing efforts to find a solution to the current problems with the supply of Rilutek (also known as riluzole), in partnership with everyone in the supply chain.

A second round-table meeting was held on 14th October, to follow up on the August meeting. The participants were:

• Alliance Healthcare
• The Association of the British Pharmaceutical Industry
• The British Association of Pharmaceutical Wholesalers
• The Pharmaceutical Services Negotiating Committee
• Sanofi Aventis
• The Department of Health

All parties reaffirmed their commitment to ensuring that all people with MND are able to access Rilutek easily and reliably.

The problem is very difficult to solve; it has occured because of the pound's weakness against the euro, and higher drug prices in some parts of the EU. This means that it is more profitable for companies to export Rilutek from the UK, than to sell it here.

Given that MND progresses rapidly, and Rilutek is currently the only effective drug at slowing its progression, the fact that a simple solution can not be quickly found was agreed by all parties to be deeply frustrating and troubling.

Nonetheless, serious consideration is being given to a range of possible routes to a resolution.

Bilateral discussions between all the parties who attended the meeting will continue for the rest of the year, and it is hoped that a workable solution will be available in 2010.

In the meantime, the Sanofi Aventis emergency arrangements remain in place: people with MND who cannot obtain Rilutek can ask their pharmacist to arrange for a supply to be sent direct by phoning 0800 854430.

There have been reports of pharmacists being reluctant to use this facility because, for instance, they fear they might lose the discount they receive from a wholesaler. We have been assured this will not be the case, and pharmacists can contact either Sanofi Aventis (as above) or the Pharmaceutical Services Negotiating Committee (01296 432823) if in doubt.

Life with MND

There is a new website about people's experiences of living with MND. The site draws on a research study which involved interviews with 35 people with MND and 11 carers around the country. Visitors to the site will be able to see and listen to real people talking about topics such as their immediate reaction to the diagnosis; how they manage daily life; the impact on their family; how they made decisions about equipment, home adaptations

In the last few years the site has grown and gone on to win awards for its outstanding provision of information on a range of health issues, and is intended for patients, families and healthcare professionals as an extra source of information and support, as well as a teaching aid for health professionals. The web address is  www.healthtalkonline.org

Will you?

Have you thought about making  a Will ? Leaving a Will is a very important way of securing the future of your family and friends. By leaving the MND Association a legacy (gift) in your Will, it is also a tremendous and thoughtful way of supporting the Association, indeed legacies provide a vital 25% of our annual income. Your valuable gift would be exempt from Inheritance Tax and form a key part of the Association's long-term income, helping the Association to continue providing essential information, support and advice for people living with MND, their families and carers, and continue to search for better treatments and ultimately a cure for MND. To receive your free Legacy Information Pack contact Stephen May at stephen.may@mndassociation.org and further details are available at www.mndassociation.org/legacies

Useful information for carers

If people are unable to attend an optician for a sight test or a dentist for dental problems, a home visit might be offered by the NHS

• A Carers' Card can show that you look after a person with MND which might be useful in times of airport chaos, long queues, etc. 
• The Post Office has a travel insurance policy for people with disabilities. Make sure it meets your requirements. 
• If you use a stair lift, an electric bed or a "Possum" you can be put on an At Risk register in case of power failure. Contact your electricity supplier with your account number and postcode, or www.homeheathelpline.org

The You and Yours programme on BBC Radio 4 has launched an interactive tool to give people an idea of how much social care support they are entitled to and how much it will cost. People are also being invited to contribute to the Government's national consultation on the future of social care by completing a questionnaire on the You and Yours website. For info visit www.bbc.co.uk/radio4/youandyours/careintheuk/index.shtml

Carers UK has just produced " Looking after someone- a guide to carers rights and benefits 2008/9 " The guide sets what rights carers have and how they can get financial help, practical help, and help combining work and caring. Individual copies can be obtained from the Carers Website.

Carers UK Contact  ( England)  Email : info@carersuk.org  Website  www.carersuk.org

Carers Direct is an NHS  choices website, giving information, advice and support for carers. It provides step by step guides on many issues affecting carers, including , money and legal matters and how to claim benefits, how to access the practical help available for carers, as well as advice on work and study and how these can be combined with being a carer. Visit  www.nhs.uk/CarersDirect

New Carers' Pack

The Association is developing a new carers pack, and carers are invited to help shape the pack by sharing ideas about the sort of information the would like to see included. If you would like to get involved, or just find out more, please contact: sharon.schillerstrom@mndassociation.org.

Did you know there are pages on the Association's website specifically aimed at carers you can find these by entering "carers " in the search box on Home Page.

BOOKS Two books and one booklet  are available which may be of interest. The first is "The Carer's Handbook"    which is published by HowtoBooks price £10.99  www.howtobooks.co.uk and covers what carers need to know to do the job; how to find a way through maze of health, local authority and voluntary agencies, guidance on day to day practicalities, financial and employment rights and coping with emergencies.      

Prescriptions

The Association is working to enable everyone with MND to obtain free prescriptions.  Some people will automatically be exempt because they are over 60, are claiming income support or receive the maximum award of working families tax credit or disabled persons tax credit. However if someone does not fall into any of these categories they may still be able to obtain an exemption certificate. You can obtain an exemption certificate if you have  " a continuing physical disability that prevents you from leaving home without the help of another person" Form FP92A,available from your GP surgeries, has to be signed by the GP to confirm that the person applying qualifies.

RIG /PEG

Following problems experienced by a member of the Mid Kent Branch regarding the insertion of a RIG (Radiological inserted Gastrostomy ), the Medway and Swale MND Clinical group undertook a project to introduce a standardised approach. The Clinical Group met at the Wisdom Hospice and comprised of key professionals gathered from various agencies. Together they agreed on a multi- professional, multi-agency protocol for both RIG and PEG, and as a result and comprehensive booklet has been produced for use by people living with MND and their carers.

In addition and as a result of numerous requests from people affected by MND the association has re-introduced an information sheet for PEG it explains clearly what a PEG  ( percutaneous endoscopic gastrostomy ) is, how it is inserted, and the benefits of having one.  For further information on either you should contact the Branch via email at  sessex@mndassociation.org.

Non-Invasive Ventilation Campaign Group

The Association has set up a Campaign Group to take forward work on non-invasive ventilation (NIV). The aim of the Group is to make NIV more widely available to people with MND. The first phase of the work is to gather data on how many people with MND currently use NIV and a questionnaire was included in the Spring / Summer edition of Thumb Print.      There has been a good response to the questionnaire with over 200 completed questionnaires and a further 20 through the website. The results are being analyzed and the results used to make NIV more widely available to people with MND.

The All- Party Parliamentary Group on MND has been keen to help with the campaign and will be carrying out its own survey of what respiratory services Primary Care Trusts in England and Local Health Boards in Wales say they provide to people with MND. Once we have a clearer picture of what services are being provided, we can target our influencing activities more effectively.

Information for Wheelchair and Scooter Users

Public transport should become more accessible for wheelchair users in the future. New regulations mean that in future all trains, buses and taxis have to be designed to carry wheelchair travellers." Get Wheelchair Wise " is a booklet containing information about how to get the best from public transport. If you prefer to get about under your own steam there is a Highway Code available for Wheelchair and Electric Scooter users. It gives lots of useful information about where and how you can safely drive your vehicle.

To obtain a free copy of  either of the above contact BHTA Publications 01732 458868

Love and Care for Pets in Need

The Cinnamon Trust is a national charity for elderly and terminally ill people and their much loved pets. It addresses the problems that owners encounter in the daily care of their pets, as well as taking life-time care of bereaved pets. A national network of 8,000 registered volunteers provide service in the community by offering dog walking, grooming, taking a pet to the vets and short term fostering when an owner needs to go into a hospice or hospital. For bereaved pets there is long term fostering or sanctuary. For further information the website is www.cinnamon.org.uk

Bereavement Register

The Bereavement Register is a service to reduce the amount of direct mail to those who have died, which can be distressing. To register a death visit www.the-bereavement-Register.org.uk. and the name and address details will be removed from companies databases and mailing files.

Walking Aid

A West Midlands Branch Committee member living with MND recently trialled an innovative new product called MuSmate, which is a walking aid for people with drop-foot. It uses the action of elastic cord to support the lifting of the foot during walking movement. It would be advisable to seek advice from a health professional before purchasing any piece of equipment and for further information you can visit the website www.musmate.co.uk

Highway Code

The latest edition of the Highway Code contains 29 more rules including:- New safety code for users of powered wheelchairs and scooters.   Rules and regulations about governing these vehicles.   Use and speed limit relating to class two  and  three vehicles. The Official Highway Code  is priced at £2.50  details on www.tsoshop.co.uk/highwaycode

Be a careful internet user!

A multitude of information is available at your fingertips on the World Wide Web. The internet can be an excellent source of health- related information. In fact ,seeking health information is the third most common reason people go online. However, it is important to educate yourself and carefully assess the content of Web sites. To evaluate the validity of a health Web site, look for these important characteristics.

The purpose of the Web site should be clearly stated.

The authors of the material must be identified.  Look for the authors' credentials.  Is the author a physician, nurse or other health care professional?

The owner of the Web site and the organization with which the author is affiliated should be identified with contact information.

Beware of health Web sites that appear to be trying to sell something.

If the Web site quotes material from another source, the appropriate credit should be given.

The date of publication should be clearly posted. Make sure the information you are reading is current.

The Web site should have a clearly stated privacy and security policy, especially if you are disclosing personal information.

The internet has become a valuable tool to give and receive information. As long as you can balance what you read with the regular consultation of your physician or other medical professional, you can increase your knowledge with both efficiency and confidence.

LinkGroup

Set up one year ago the Linkgroup is a self-supporting contact group for anyone diagnosed with a slower progressing form of MND  (progressive muscular atrophy or primary lateral sclerosis) or have you been living with MND for more than five years. It has well over forty members and there is a monthly newsletter with information, advice, queries, experience and humour, whilst contact occurs between individuals via e-mail and a recently set up private chat room. So if you would like to contact others with a similar disease to your own. e-mail  care@mndassociation.org 

With the help and support of members of the  PMA/PLS  email support group new pages have been added to the website to share those useful hints and tips as provided by people living with MND. Visit : www.mndassociation.org/hintsandtips

RADAR - (Royal Association for Disability and Rehabilitation )

The Association is publishing a number of guide books aimed at helping disabled people to lead more independent lives. Amongst these is There and Back a travel guide to non local travel. Holidays in Britain and Ireland and  If only I'd known that a year ago a book intended for newly disabled people or those who have acquired another impairment, their families and friends; it covers areas such as home accommodation, aids and equipment, education and employment, discrimination, health and social services, transport, sport and leisure, benefits and personal relationships. These books are all available through their online bookshop at www.radar-shop.org.uk

BLUE BADGE SCHEME - ARRANGEMENT FOR TRAVELING ABROAD

Reciprocal arrangements with a number of European countries means disabled visitors can enjoy the parking concessions of that country by displaying their own Blue Badge. Phone 0870 122 6236 for a copy of the leaflet produced by the " Mobility & Inclusion Unit " which gives details of these concessions. It is also very important that your badge is displayed correctly by using a blue badge holder, these hold both the clock and badge and are available for £1.50 inc. postage. Contact Caroline or Sharon on 0787 645 2381.

BLUE BADGE SCHEME - NEW RULES

New rules have been introduced relating to the Blue Badges parking scheme for disabled drivers and passengers. The biggest change is the introduction of an anti fraud hologram to help prevent forgeries. Also the new badge will include a gender specific serial number to help parking enforcement, and clearer information about the use and abuse scheme directly on the badge. Local authorities are responsible for issuing Blue Badges. Call your local offices and request and application form or log on to www.direct.gov.uk go to the motoring and transport section and download a form.

The Website also has a facility which allows people to find Blue Badge parking bays, Red Route parking bays, petrol stations and public toilets within many of the major towns and cities in the U.K. The parking bays etc. are all identified by icons which if opened gives you the street address, number of bays available and any restrictions. Listings for garages provide information on whether there is a cash machine and any disabled facilities.

RIGHT TO FLY

Under new European law, if you are disabled or have difficulty moving around, you now have improved rights to assistance when you fly to and from Europe. For further information go to www.equalityhumanrights.com

Accessible Britain

The Motability Car Scheme and Rough Guides have between them produced a guide for ideas on tried and tested days out across the U.K. The guide is user friendly with handy maps to help plan your day out. The guide costs £6.99 (inc. P&P) or free to Blue Badge holders who pay £1.99 for P&P available on line at www.accessibleguide.co.uk

MOBILISE

MOBILISE is an organisation run by and for disabled people to promote improved access and mobility. During summer months they receive a number of call from people wanting to know how and where they can hire beach and all-terrain wheelchairs. After looking into this they have now produced a list of beach wheelchair schemes from across the U.K. It can be downloaded from www.mobilise.info/Magazine.asp?ItemId=69. or phone 01508 489449

REMAP - Technical Equipment for Disabled People

Remap volunteers design and manufacture, or adapt, equipment for people with disabilities providing it is not available commercially. They receive requests for help from occupational therapists, other healthcare professionals, charities acting for people with disabilities, the individuals and their families and carers. For further information contact their website.     www.remap.info

CINEMA FREE !!

The Cinema Exhibitors Association offers free admission to individuals who accompany people living with a disability to the cinema. A national card is required to verify the holder is entitled to one free ticket for a person accompanying them to the cinema. To apply for the card, you need to be in receipt of Disability Living Allowance or Attendance Allowance. The card is valid for three years from date of issue. A processing fee of £5 is chargeable per card and this should be sent with the completed application form. The form is available from website www.ceacard.co.uk 

NO MORE SPILLS

An MS sufferer has inspired a novel design for an unspillable drinking cup. The "easi2drink" insert, which fits into a ceramic or glass beaker, is based on the idea of using a cluster of narrow tubes within the cup. The insert divides the drinking vessel into separate compartments so that the user can drink confidently without having to worry about spills. For further info. please contact the Branch via. email    sessex@mndassociation.org

KEEP WARM KEEP WELL

A guide for people with disabilities or long term health conditions is produced by the Department of Health in association with other partners. The aim is to help maintain good health during the winter and take advantage of financial help and benefits available.  For a copy email dh@prolog.uk.com or order at www.orderline.dh.gov.uk and quote 289400

EBAY RAISING  MONEY AND AWARENESS

HAVE you got something  to sell or do you know someone who has? If so we are now a registered charity on ebay!  To sell your unwanted items simply follow the simple 1-2-3 of selling for charity on Ebay:

1 If you haven’t used Ebay before, you will need to register with them first. www.ebay.co.uk/ebayforcharity

2 List your sale items and look out for the charity box just below where you set your price. Select the MND Association and the percentage of your final selling price that you'd like to donate (10% to 100%).Our mission statement and logo will appear in your listing.

3 A week after your item sells, eBay’s charity partner MissionFish will automatically collect the donation from you.

Every listing can be seen by everyone who searches on eBay.co.uk and the Association gets extra visibility through the ‘eBay for Charity’ pages. It’s an altogether great way to raise money and awareness!

Happy selling and if you have any queries, please contact Stuart or Esther, at fundraising@mndassociation.org