| Description | Link - Note that all these links will open in a new window |
Dementias & Neurodegenerative Diseases Research Network websiteThe 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. |
http://www.dendron.org.uk |
Sarah's StoryA hardhitting, disturbing yet thought provoking short film about MND which highlights the rapid degradation caused by this silent attacker. |
http://www.sarahsstory.org.uk/ |
Birmingham SymposiumA 10 minute video of the Birmingham Symposium which was held in November 2009. |
http://www.youtube.com/watch?v=3X4Pkw-_i38 |
Ceiling Track HoistsInformation on ceiling track hoists, especially which hotels have them. |
http://www.chuc.org.uk |
DisabledGo Access InformationDisabledGo 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.info/ |
New Gene MutationLess than a year after the last major research breakthrough, collaborative researchers have discovered a new gene mutation that causes a rare inherited form of MND.This was also featured on the BBC Web Site, clink here for that article |
http://www.mndassociation.org/researchnews |
A directory of information for the Wheelchair UserInformation on sports activities, Clothes designed with the chair user in mind, holiday locations, dating, theatre & arts companies, new wheelchair designs and much much more. |
http://www.thewheellife.com/live/home.php |
research and information for older and disabled peopleRicability is an independent consumer research charity providing free, practical and unbiased reports for older and disabled people. |
http://www.ricability.org.uk/ |
Music DownloadBy Ricky GrahamA new edit of the track “Beautiful Beginning”, originally written and released in 2006. This version features vocals by Robbie Reid. Remix of “Music Box” by DJ Elemental. ”Music Box“ is featured on the 2009 release, “Rain Down Fire.” |
http://www.http://shop.rickygraham.com/ |
A directory of accessible accommodation and travelThe 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/openbritain |
www.patientslikeme.comShare 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 |
Justgiving for CharitiesThis site will process online donations and reclaim Gift Aid for member charities, and charge a small fee (5%) for the service. This is similar service to www.virginmoney.co.uk who charge 2% |
http://www.justgiving.com/ |
Virgin Money Giving for CharitiesThis 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.virginmoneygiving.co.uk |
RAC Text NumberAs well as their standard breakdown number (0800 828282), the RAC have typetalk and text facilities (07855 828 282 ). |
http://www.rac.co.uk/breakdown/blue-badge/ |
The National MND Association WebSiteHere 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 |
Directory of ServicesA directory of services for disabled people. |
http://www.http://disabled4disabled.co.uk/ |
FIA Guide for the disabled travellerWelcome 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/ |
Free Home Fire Safety CheckIf you are concerned about fire safety in your home, you can request a free home fire safety check from your local Northern Ireland Fire and Rescue Service(NIFRS). You can call them on 028 9260 0477 or use the online form.They will inspect your home to help you identify any potential fire risks and show you what to do to reduce or prevent them. They can also help you to develop an escape plan for your property taking into account the capabilities of the occupants. |
http://www.nifrs.org/fire_safety.php?sec=2591 |
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/ |
Wheelchair InsuranceThis 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 |
Colm Murray - RTE Broadcaster - Trying to work against the oddsColm Murray relates his experience of MND and looks forward to the trial of an experimental drug called Dexpramipexole. Colm Murray - RTE Broadcaster - Trying to work against the odds |
http://www.irishtimes.com/newspaper/health/2011/0614/1224298853531.html |
Warmer Homes SchemeIf you receive certain benefits (DLA is one of them) you may be eligible for insulation and heating through the Warm Homes Scheme. Freephone 0800 988 0559 for more details. |
http://www.warm-homes.com/ |
Join the campaign against disability benefit cuts!Disabled people, those with long-term conditions and their families are being hit hard by cuts to the benefits and services they need to live their lives. The Hardest Hit campaign, organised jointly by the Disability Benefits Consortium and the UK Disabled People’s Council, brings together individuals and organisations to send a clear message to the Government: stop these cuts. |
http://www.hardesthit.org.uk/ |
Motor Neurone Disease ResearchThe 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 |
Disabled Living FoundationDLF 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/ |
The Good Access GuideAn 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/ |
Benefits and Tax CreditsA very useful and clear site which explains many of the benefits and tax credits available. |
http://www.lawcentreni.org/EoR/ |
DLA and AA criteriaThis site provides clear criteria for Disabled Living Allowance(DLA) and Attendance Allowance(AA). Note that the rates quoted are out of date. |
http://www.lawcentreni.org/EoR/disability_living_allowance.htm |
The BioMOx StudyMND (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 |
Applying for a temporary disabled parking permit for OrlandoThis is a very useful forum with who to contact to obtain a temporary disabled parking permit (Blue Badge) for Orlando. |
http://www.orlandoflorida.net/forums/uk-trip-planning/580-disabled-parking-orlando-uk-visitors.html |
Notes on Online GivingOnline 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.htm |
Motor Neurone Disease Association of Northern Ireland
