Centronuclear and Myotubular Myopathy Information Point

Notice Board

If you have a notice to include, please write to Toni at the email below.

Click here for the latest news from the Muscular Dystrophy Campaign

Boston Children's Hospital

The Boston Children's Hospital are planning a demographic study for people affected by Centronuclear and Myotubular Myopathy - to get involved register at the Joshua Frase Foundation website.

* * * Important Medical Device Alert * * *
Reusable Nebulisers and Legionella

The potential risk of transmission of legionella bacteria owing to poor drying after cleaning of reusable nebulisers has been highlighted in a medical device alert issued by the Medicines and Healthcare Products Regulatory Agency. Medical, nursing and purchasing staff are advised to follow manufacturer’s instructions for cleaning and thorough drying of the nebulisers. Users must ensure that no droplets of water remain in the nebuliser before reuse, and nebulisers designated as single-use should never be reused. Further details at www.mhra.gov.uk

Recycle

The Muscular Dystrophy Campaign have come up with a way to help the environment and help themselves at the same time. Each year in the UK we throw away over seven million toner cartridges from printers. These can be recycled and are worth a potential £18 million to charities across the country.

MDC in partnership with Reclaim-IT can collect cartridges free of charge from your home or work, school or university. Each one collected is worth an average of £2.50 to MDC. For more information or leaflets to promote the scheme, please call Elaine Bennett on 020 7819 1804 or email elaineb@muscular-dystrophy.org

In addition they can also make money from foreign coins and used stamps - these can be sent to Peter Lawson at Muscular Dystrophy Campaign, 7-11 Prescott Place, London SW4 6BS.

In the USA the Joshua Frase Foundation is also collecting old printer cartridges and mobile phones, which can be recycled for cash. For further information, contact the Funding Factory on 888 883 8237 or email them at info@fundingfactory.com, reference 38650.

Sportability

Sportability, the charity which provides sport and challenge pursuits for people with paralysis, is now open to people with Muscular Dystrophy. If you are interested in taking part in one of its programmes, telphone 020 8959 0089 or email infor@sportability.org. Further information can be found on the Sportability website

Means Test Campaign

Homes Fit for Children is a campaign seeking to change the means testing part of the Disabled Facilities Grants, so that the disabled child is financially assessed rather than the parents.

The move has some parliamentary support but the campaign now needs personal testimonies to boost is case.

If you are the parent of a disabled child and have had difficulties with adaptions becasuse of the financial contribution you were expected to pay and are willing to discuss this further, then please contact researcher Frances Heywood on 01242 521265 or email f.heywood@bristol.ac.uk. As the system is different in Scotland this applies only to families living un England, Wales or Northern Ireland. Details will be kept anonymous if you wish. Please note Frances cannot help with individual cases. For further information about the campaign contact Yvonne Masset, the MDC's National Occupational Therapy Advisor.

In the USA to learn what you are entitled to for pocket for transportation, special schools, OT, PT,etc.visit Schwab Learning

Joseph Patrick Trust

The Joseph patrick Trust (JPT) is the grant making subsidiary of the MDC, promoting mobility and independence amongst people with muscle disease. Grants vary between £200 and £900 and are awarded to help buy specialist equipment such as powered wheelchairs and electric beds. If you are interested in helping the JPT or would like to find out more about the grants programme please contact 020 7720 8055.

Tax Relief

HM Customs and Excise have issued answers to frequently asked questions about VAT reliefs available to those with disabilities. Visit the HM Customs and Excise website to find out what goods are exempt from VAT.

toni.abram1@btopenworld.com