Useful Links

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The National MND Association WebSite
Here you will find a vast amount of information on MND, for those living with MND, caring for someone living with MND or a medical interest in MND.
http://www.mndassociation.org
Ceiling Track Hoists
Information on ceiling track hoists, especially which hotels have them.
http://www.chuc.org.uk/index.php
DisabledGo Access Information
DisabledGo provides free detailed access information for disabled people across the UK and Ireland. The level of detail is amazing, how wide doors are? how heavy are they? what height is the lowest table? These and many more can be answered from this site.
http://www.disabledgo.com
research and information for older and disabled people
Ricability is an independent consumer research charity providing free, practical and unbiased reports for older and disabled people.
http://www.ricability.org.uk/
A directory of accessible accommodation and travel
The new OpenBritain Guide is now the definitive book for the traveller with access needs. The guide is packed with easy to use information from where to stay, how to get there and what to see and do once your there.
http://www.openbritain.net/
www.patientslikeme.com
Share your experience of symptoms and treatments with others who are living with MND. Benefit from others who are making the same journey.
http://www.patientslikeme.com
Virgin Money Giving for Charities
This site will process online donations and reclaim Gift Aid for member charities, and charge a small fee (2%) for the service. This is similar service to http://www.justgiving.com/ who charge 5%
http://www.http://uk.virginmoneygiving.com/giving/
RAC Text Number
As well as their standard breakdown number (0800 828282), the RAC have typetalk and text facilities (07855 828 282 ).
https://www.rac.co.uk/contact-us/breakdown
Motor Neurone Disease Research
The research pages of the MND Association website. Here you can learn about the search for causes and treatments for MND, and find out how the MND Association is involved.
http://www.mndassociation.org/research
Dementias & Neurodegenerative Diseases Research Network website
The NIHR Dementias & Neurodegenerative Diseases Research Network (NIHR DeNDRoN) is one of six topic-specific Clinical Research Networks funded by the Department of Health in England as part of the National Institute for Health Research. NIHR DeNDRoN supports the development and delivery of clinical research in the NHS in the dementias, Parkinson's disease, motor neurone disease, Huntington's disease and other neurodegenerative diseases.
https://www.nihr.ac.uk/
The BioMOx Study
MND (ALS) research is held back in part by the lack of an early diagnostic test and predictable markers of the progression of the disease these are called biomarkers. Patients still wait too long for a certain diagnosis of MND, and it is possible that future drugs may need to be given at much earlier stages to be most effective. Clinical trials currently require lengthy study times to get a clear answer, and don't always account for the variability of the disease between patients.
http://www.biomox.net
Benefits and Tax Credits
A very useful and clear site which explains many of the benefits and tax credits available..
http://www.lawcentreni.org/EoR/
The Good Access Guide
An online guide to life, leisure and mobility for disabled people, seniors, and anyone whose life is made easier by better access to goods, services and amenities.
http://www.goodaccessguide.co.uk/
Disabled Living Foundation
DLF is a national charity that provides impartial advice, information and training on daily living aids. It is a founder member of the Information Standard, a certification scheme for health and social care information.
http://www.dlf.org.uk/
Directory of Services
A directory of services for disabled people.
http://www.http://disabled4disabled.co.uk/
Fact Sheet - Online Giving
Online Giving is a very easy way for people to donate to a charity, it is also easy to setup. Gift Aid on donations can be easily reclaimed as the organisation does this for you.
Currently www.virginmoney.co.uk charges less (2%) than http://www.justgiving.com/ (5%).
http://www.mndani.com/reference/onlinegiving.pdf
Wheelchair Insurance
This insurance has been carefully designed by Fish Insurance who have been providing specialist insurance solutions for people with mobility difficulties for over 25 years. This policy is designed to meet the demands and needs of a person wishing to purchase insurance protection against unforeseen financial implications both now and in the future arising out of the ownership or usage of a mobility product.
Please check carefully that this policy suits your needs.
http://www.fishinsurance.co.uk/powered-wheelchair-insurance.php
Strangford Bay Lodge
"As summer approaches, getting away will be just a distant dream for some families as they can be put off leaving home in case their destination can't meet the needs of their family. Because if you have a member of the family with a disability, getting away is not as easy as it sounds. But that's about to change with the opening of Strangford Bay Lodge... Looking after a loved one can be hard and if anyone deserves a holiday or a short break, it's the thousands of selfless carers who look after their loved ones full-time, and wouldn't have it any other way." Laura Dunlop.
http://www.strangfordbaylodge.com/
FIA Guide for the disabled traveller
Welcome to the FIA Guide for the disabled traveller, an essential tool to inform you on using your disability Parking Permit / Placard / Card / Blue Badge in your own country, and abroad
http://www.fiadisabledtravellers.com/en/home/
Fact Sheet - Organising a Street Collection
Here are some notes that may help you to organise a street collection.
http://www.mndani.com/reference/organisingastreetcollection.pdf
Join the Northern Ireland Rare Disease Partnership
The NIRDP has been set up to bring together those living with a rare disease, and the clinicians, researchers and others working in the field, to work collaboratively to raise awareness, improve professional training and service provision, and campaign for those living with a rare disease in Northern Ireland.
http://www.nirdp.org.uk/join-us/
Disability Lifestyle Magazine
A comprehensive magazine covering many topics useful to a disabled person.
http://www.http://ablemagazine.co.uk/
Access at Last
This site offers the services you need when you travel. Working with accommodation service providers to take them beyond an unrealistic or poorly advised interpretation of accessibility and help them understand the requirements of disabled people.
http://www.accessatlast.com/
Access to Ferry Travel
Access to Ferry Travel A guide for passengers with a disability and less mobile passengers from the Consumer Council.
http://www.consumercouncil.org.uk/filestore/documents/38641_Access_to_Ferry_Travel_Booklet_2016.pdf
Translink Train and Bus Accessibility
Translink is the main provider of public transport in Northern Ireland. Dedicated to providing co-ordinated bus and rail services that are easy to use, reliable and comfortable. We are also committed to making sure that our services are safe and accessible to everyone.
This booklet sets out our current service levels for disabled people and those older people who may find using transport difficult. It contains information and advice on how to use our services, and contact details to help you plan your journey.
http://www.translink.co.uk/accessibility/
The Therapy Directory
Therapy Directory is dedicated to putting individuals who are searching for a practitioner, in touch with a professional who is both qualified and suitable for their needs. In addition, we are also passionate about increasing awareness of the positive benefits of complementary and alternative therapies.
http://www.therapy-directory.org.uk/
IT Helping Hand
For some disabled people gadgets may present them with some difficulties. To help reap the benefits a helping hand should come in useful. AbilityNet’s free helpline offers expert advice and information about how disabled people can use computers and the internet. Our ITCanHelp (http://www.itcanhelp.org.uk/) home visit service has a network of AccessNI checked volunteers who offer free assistance to disabled people in their homes.
If you have a friend, relation or client that you think might like to hear of these services please note the contact details that follow.
David Brew
Volunteer Area Organiser
Free helpline 0800 269 545
Home visits 0800 269 545
http://www.itcanhelp.org.uk
NI Water Customer Care Register
NI Water provides essential services for all our customers throughout Northern Ireland. We offer a range of free additional services if you have a disability, are an older consumer, have a serious medical condition or need extra help for any other reason. You need to join our Customer Care Register to get the extra free services you or anyone in your household would like to receive.
http://www.niwater.com/customer-care-register/
The Cinema Exhibitors' Association Card
This is a national card that can be used to verify that the holder is entitled to one free ticket for a person accompanying them to the cinema.
https://www.ceacard.co.uk/
Carers Northern Ireland
Carers Northern Ireland is a charity set up to support people who care for an elderly relative, a sick friend or a disabled family member. We are part of Carers UK.
 
Carers Northern Ireland:
 
•supports carers and provides information and advice about caring
•influences policy through our research based on carers real life experiences
•campaigns to make life better for carers
http://www.carersuk.org/northernireland/news-ni
My Way Access
My Way Access is like the ‘Trip Advisor’ specifically for disabled people. Instead of planning where to do on holiday destinations, it’s about planning where to go in neighbouring towns and cities across Ireland and the UK.
http://www.mywayaccess.com/
Rough Guide to Accessible Britain
The brand new fifth edition of the Rough Guide to Accessible Britain is now available to view for free via our online reader . It’s packed with over 200 inspiring ideas for fantastic worry-free days out with reviews, hints and tips on some of the UK’s best attractions written by and for disabled people. To make planning your days out easier, entries are grouped into 10 regional chapters with everything from museums, parks and studio tours, to scenic drives and coastal towns. Every review contains all the access information you need to enjoy your day including disabled parking, wheelchair access and more.
http://www.accessibleguide.co.uk/home.php
Selecting the appropriate wheelchair - MND Association Video
A short film about selecting the appropriate electrically powered indoor / outdoor wheelchair (EPIOC). The wheelchairs shown in this film have been developed by Invacare, Ottobock and Sunrise Medical in conjunction with the MND Association, to provide features that best meet the needs of people living with MND and other progressive conditions.
http://www.http://youtu.be/C82VdIKq4dQ
2014 National AGM
Our AGM and Annual Conference took place on Saturday 13th September at the Radisson Blu Hotel at East Midlands Airport. The conference was a great opportunity for people with MND, their carers and families to meet each other and to learn more about MND and the care and support available to them. There was also a range of information and advice stands manned throughout the day by Association staff and external exhibitors. If you were unable to attend the main speakers and the AGM was live streamed and you can watch the main presentations held on the day by clicking on the link.
http://www.mndassociation.org/news-and-events/events/conferences/AGMandAnnualConference
Information and Advice for older people in northern ireland
In 2013, the "Feel Safe" project was established by Age Sector Platform to address fear of crime among older people in Northern Ireland and to help older people reduce their risk of being a victim of crime.
http://www.feel-safe.org.uk
Heathrow Airport Travel Guide
the Heathrow Airport Guide - the definitive resource to help you find everything you need when travelling to, from and around the world's busiest international airport.
http://www.heathrow-airport-guide.co.uk/senior-travel.html
Fact Sheet - Wedding Favours
As you plan your wedding you might want to think of alternative presents and wedding favours so here are a few ideas that would help people living with Motor Neurone Disease.
Please try to give us seven days notice!
http://www.http://mndani.com/weddingfavours.asp
Fact Sheet - Need a Will
Andrew Taylor, Solicitor, has offered to donate his fee to MNDA NI for every Will he writes if you mention MNDANI.
http://www.mndani.com/events.asp?opt=S&evid=496
Fact Sheet - Local Funding
This explains some of the options around local funding.
http://www.http://mndani.com/reference/local_funding.php
MND Research List
The Association has created a list of people with MND who are interested in taking part in research. Inclusion in this list is optional and does not guarantee that you will be included in future research projects.
 
Please note: Very few researchers will be looking for people to take part in clinical trials of potential new treatments. If you join the MND Research List, you are most likely to be invited to participate in studies that aim to improve understanding of the disease or generate evidence to help raise standards of care.
http://www.mndassociation.org/research/mnd-research-and-you/get-involved-in-research/mnd-research-list/
Euans Guide
Euan's Guide features disabled access reviews from disabled people and their friends and families.
"The aim of Euan's Guide is to empower disabled people by providing information that will give confidence and choices for getting out and about."
Euan MacDonald, Founder of Euan's Guide
https://www.euansguide.com/
Fact Sheet - Tribute and Fightback Funds
Notes on the various funds provided by the association
http://www.http://mndani.com/reference/TributeFunds.pdf
Palliative Hub
Connecting Palliative Care in Ireland
The Need to Understand Palliative Care is on the Rise.
The Palliative Hub is a gateway to palliative care information and resources in the Republic of Ireland and Northern Ireland
http://www.thepalliativehub.com/
Disabled Friendly Holiday Cottages with Access for All
This is the time of year when many of us look forward to a change of scene, a short break away from the routine, somewhere to stay where we can relax but with all the comforts and facilities of home!
In 2002 as a result of five years of fundraising by local volunteers, and with the support of the Church of Scotland, these fine old granite buildings were transformed into four expertly designed self-catering cottages.
http://www.crathieholidays.org.uk
The Palliative Hub
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
http://www.thepalliativehub.com/
Benefits Advice Line for those affected by MND in Northern Ireland
It can be difficult to think or talk about money or to claim benefits if you have not already done so. In partnership with Advice NI , the Association has created a free, confidential & independent telephone and e-mail benefits advice service for people with or affected by MND.
http://www.mndani.com/uploads/NI-Web%20and%20newsletter%20narrative.pdf
Caring for Carers
Caring for Carers , a new website dedicated to carers and family specifically caring for those with palliative care needs. The website consists of 8 different sections and contains videos, downloads, links and lots of practical information to support family carers as they support a person who needs palliative care.
http://www.http://carers.thepalliativehub.com/
Next Generation Text Service
If on telephone calls you can't hear the other person's voice or don't catch all that they're saying, or they can't understand what you're saying, the Next Generation Text (NGT) Service can help.
http://www.ngts.org.uk/

The Thumbs Up sign represents David Niven's last defiant gesture. It remains the Motor Neurone Disease Association's symbol of hope