Latest news from Muscular Dystrophy Campaign

Welcome to the latest news from the Muscular Dystrophy Campaign, which this month includes the release of a report by experts urging the government to approve new technologies to prevent mitochondrial disease ( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXFW-0/c.aspx )being passed from parents to children.

Groundbreaking steps

The UK is closer to approving new technologies to prevent mitochondrial disease ( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXFW-0/c.aspx ) being passed from parents to children. New reports from the Human Fertility and Embryology Authority say there is no evidence of these techniques being unsafe, and the government is being urged to move the process forward.

Add muscle to our manifestos

Not long now until election day on 5 May, and our Manifesto for Muscle pledges in Northern Ireland ( http://muscular dystrophy-campaign.org/720-F0AY-3FKLR9-5TXFX 0/c.aspx ), Scotland (http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXFY-0/c.aspx )and Wales (http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXFZ-0/c.aspx )have already gathered signatures from a number of candidates. Do urge your local candidate to do likewise and sign up to support our campaign to improve access to services.

Northern Ireland families fight for care

Campaigners and leading clinicians in Northern Ireland announced their fight for improved specialist neuromuscular care at the Muscle Group launch ( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXG0-0/c.aspx )in Belfast at the beginning of April. Supporting the launch, Northern Ireland Trailblazers ( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXG1-0/c.aspx ) talked about their schools’ project and objectives for their regional investigation and report on access to services.

Speaking up for rare conditions

West Midlands campaigners have urged Health Minister Paul Burstow MP to focus on specialised services for people with rare and very rare conditions in the forthcoming months at a meeting in the Department of Health ( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXG2-0/c.aspx )with the Muscular Dystrophy Campaign.

Talking about neuromuscular care

Our recent Neuromuscular Care Conference ( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXG3 0/c.aspx )focused on the care, clinical and community support needed by families living with neuromuscular conditions. About 160 care, physiotherapy and occupational therapy
professionals took part in the two-day event in East Midlands, where patients and carers facilitated workshops.

Guillain-Barre Support Group Conference

Join the Guillain-Barre Support Group ( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXG4 0/c.aspx )on Saturday 14 May in Leeds for their annual conference. The group raises awareness of GBS, CIDP
and related conditions throughout Britain and Ireland, and awards research grants.

Improved quality of patient care

The NHS is to introduce Summary Care Records ( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXG5-0/c.aspx )to improve the safety and quality of patient care. The electronic record will give healthcare staff easier access to essential information about you, to ensure safe treatment when you need care in an emergency or when your GP practice is closed.

Newborn screening for Duchenne muscular dystrophy

A meeting was held in London in March to discuss the pros and cons of introducing a newborn screening programme (
http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXG6-0/c.aspx ) for Duchenne muscular dystrophy in the UK. We are consulting families affected by muscular
dystrophy on this complex issue. Join the conversation on Talk MD ( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXG7-0/c.aspx )

Breakthrough in targeting drugs

Research we part-funded has reported a new way of targeting drugs ( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXG8-0/c.aspx )to the brain and central nervous system. This shows promise for conditions such as spinal muscular atrophy and with further research it may also be able to efficiently target muscle.

New type of limb girdle muscular dystrophy identified

Research we part-funded has discovered a new type of limb girdle muscular dystrophy ( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXG9-0/c.aspx ). This will
improve the diagnosis of the condition and knowledge gained in this study will help in the search for treatments for the group of congenital and limb girdle muscular dystrophies known at the dystroglycanopathies.

£2.5 million boost to Duchenne research

Dr Matthew Wood in Oxford has been awarded a £2.5 million grant ( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGA-0/c.aspx ) funded by the Wellcome Trust and the Department of Health to develop exon skipping drugs for Duchenne muscular dystrophy.

Duchenne clinical trial results

Prosensa have published some encouraging results ( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGB-0/c.aspx )from the exon skipping clinical trial conducted in Europe. Although the results of such a small study need to be interpreted with caution, they bode well for the phase III trial already underway to more test thoroughly this drug’s effectiveness.

Genzyme fighting for access to Duchenne drug

European regulatory authorities have given Genzyme feedback about proceeding with the development of the ataluren drug (
http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGC-0/c.aspx )for Duchenne muscular dystrophy. Last year clinical trial results showed that the progression of
muscle weakness was slowed by ataluren.

Two new genes found

Researchers studying human embryonic stems cells have found two new genes ( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGD-0/c.aspx ) that may be involved in causing some of the symptoms of myotonic dystrophy. This new insight will help researchers develop treatments to address the wide range of symptoms that patients experience.

Join the run up north

Sign up now for one of the world’s most popular half marathons, the BUPA Great North Run in Newcastle. It costs £45 to register ( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGE-0/c.aspx )for the 18 September event and, in return for raising at least £300, we’ll give you not only fundraising support, but a great orange T-shirt too!

Swim, cycle and run for us

Use all your muscles to swim, cycle and run in the Virgin Active London Triathlon ( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGF-0/c.aspx ) at the end of July. Choose your category, enter as an individual or a team, and raise a minimum of £500. Entry costs £25 and we’ll give you loads of support along the way!

A gift in your Will
One in four of our vital projects is possible thanks to the gifts left by our supporters in Wills. If the time is right for you and you would like more information on leaving a gift in your Will (
http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGG-0/c.aspx )for the Muscular Dystrophy Campaign, please contact us ( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGH-0/c.aspx ).

WWE Community Champions
We have partnered with WWE, global leaders in sports entertainment, to encourage young people to get involved with volunteering and fundraising opportunities.. Our champions ( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGI-0/c.aspx )will be attending wrestling spectaculars across the UK.

Grant from JPT has “made a massive difference” (
http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGJ-0/c.aspx )  (
http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGK-0/c.aspx )

Health minister responds to questions on access to services (
http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGL-0/c.aspx )

Clinicians warn thousands of patients are at risk (
http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGM-0/c.aspx )

( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGN-0/c.aspx )

Volunteer Events Coordinator  (
http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGO-0/c.aspx

Chairperson – South West London committee (
http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGP-0/c.aspx

Fundraising Promotion and Marketing Intern (
http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGQ-0/c.aspx )        

Four Course Classic (
http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGR-0/c.aspx )

Virgin Active London Triathon (
http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGF-0/c.aspx

ASICS British 10K (
http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGS-0/c.aspx

Bristol 10k and Half Marathon  (
http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGT-0/c.aspx )

( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGU-0/c.aspx )

http://muscular-dystrophy-campaign.org/720-F0AY-473FKLR9F1-0/fw.aspx?campaignkw=Forward-to-a-friend

( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGV-0/c.aspx )

( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGW-0/c.aspx )

( http://muscular-dystrophy-campaign.org/720-F0AY-3FKLR9-5TXGX-0/c.aspx )

Muscular Dystrophy Campaign
61 Southwark Street, London SE1 0HL Tel: 020 7803 4800

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