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Actress hits out at battle for disabled

February 7, 2011

Actress hits out at battle for disabled

EveningTimes | February 7, 2011

River City star Eileen McCallum today spoke out about the battle faced by young people with a disability to achieve the life they deserve.

It comes as a new report found there were “shocking inequalities” in the jobs market and leisure industry.

People with a disabilities also face difficulties in using public transport – even though transport providers are legally required to make “reasonable adjustments” for disabled passengers.

The report was put together by campaign group Trailblazers Scotland, which is backed by charity the Muscular Dystrophy Campaign.
It found some 90% of people said they had been put at a disadvantage by the job application process, and half had never had a paid job.

Click HERE or on the image below to read more…

1 Comment | Advocacy, Awareness, United Kingdom | Tagged: advocacy, awareness, united kingdom | Permalink
Posted by stronwi

No sugar-coating for disability exhibit

January 31, 2011

No sugar-coating for disability exhibit

The Vancouver Sun | January 31, 2011 | By Kevin Griffin

VANCOUVER — For disability rights activist Catherine Frazee, the personal overlaps with the political even when she doesn’t intend it.

That happened with Frazee’s recent journey to Vancouver from Toronto for Out From Under, a unique exhibition on the social history of disability in Canada.

As one of its three curators, she felt it was important to be here for the exhibition’s opening during the Paralympic Winter Games.

Frazee, the director of Ryerson’s Institute for Disability Studies, can’t fly for medical reasons having to do with living with spinal muscular atrophy, a genetic neuromuscular disease characterized by the degeneration of the motor neurons. When she travels, she is accompanied by an attendant and Patricia Seeley, her life partner.

The only option for her was to take the train.

Click HERE or on the image below to read more…

Leave a Comment » | Advocacy, Canada, Inspiration | Tagged: advocacy, canada, inspiration | Permalink
Posted by stronwi

Family of disabled girl back mum’s condemnation of government

January 23, 2011

Family of disabled girl back mum’s condemnation of government

Sunday Sun | January 23, 2011 | By Helen Rae

THE family of a disabled girl have backed a mother who condemned Prime Minister David Cameron for failing families who need respite care.

Earlier this week, exhausted Riven Vincent said she may be forced to put her daughter, Holly, into full-time care after being denied additional support from social services and she called upon the Government to provide more funding to help those with disabled children.

The six-year-old has severe quadriplegic cerebral palsy and epilepsy and requires round-the-clock care.But her parents receive just six hours’ respite a week and, in a desperate plea posted on the parenting website Mumsnet, Ms Vincent announced she had asked social services to take Holly into care.

Parents Alison and Clint Law, of Wallsend, North Tyneside, know all too well the difficulties of looking after a disabled child 24 hours a day, seven days a week, and agreed with Ms Vincent the Government should do more.

Their wheelchair-bound daughter, Ellen, nine, has spinal muscular Atrophy Type II, meaning she has no control over her lower limbs, suffers from chest infections and requires a special diet.

Click HERE or on the image below to read more…

Leave a Comment » | Advocacy, Legislation, United Kingdom | Tagged: advocacy, legislation, united kingdom | Permalink
Posted by stronwi

Lives ‘will be lost and families torn apart’ if Northern Ireland loses muscle disease advisor

January 17, 2011

Lives ‘will be lost and families torn apart’ if Northern Ireland loses muscle disease advisor

Belfast Telegraph | January 17, 2011 | By Lisa Smyth

A woman with a life-threatening muscle disease has warned lives will be lost if Northern Ireland loses its only specialist care advisor as the NHS struggles to save money.

Northern Ireland will become the only part of the UK without a specialist care advisor for people with degenerative muscle conditions.

Funding runs out for the post at the end of March and so far health bosses have refused to say whether more money will be made available to guarantee the future of the position, which costs the health service just £50,000 a year.

Michaela Hollywood (20) has Spinal Muscular Atrophy and said the specialist care advisor has provided support and assistance during some of the most difficult periods of her life.

Click HERE or on the image below to read more…

Leave a Comment » | Advocacy, Ireland, Legislation, Uncategorized | Tagged: advocacy, ireland, legislation | Permalink
Posted by stronwi

Family’s plea for muscle disease specialist

January 13, 2011

Family’s plea for muscle disease specialist

uTV | January 13, 2011

An appeal to save Northern Ireland’s only muscle disease specialist, whose “life-changing” role is said to be under threat because of a lack of funding, has been launched by a Downpatrick family.

For the past 31 years a specialist care advisor on muscle disease has been in place here, offering emotional and practical support to up to 2,000 affected families.

However funding for the service ends in March and Michaela Hollywood, who suffers from Spinal Muscular Atrophy and also lost her sister to the condition 14 years ago, said time is running out for NHS leaders to commit to keeping the post open.

Click HERE or on the image below to read more…

Leave a Comment » | Advocacy, Ireland | Tagged: advocacy, ireland | Permalink
Posted by stronwi

Capps Highlights Santa Barbara Family’s Health Care Predicament

January 6, 2011

Capps Highlights Santa Barbara Family’s Health Care Predicament

Noozhawk | January 6, 2011 | By Ashley Schapitl

Rep. Lois Capps, D-Santa Barbara, spoke out Thursday against the Republican move to immediately repeal the newly passed health insurance reform law.

She highlighted the story of how the Strong family of Santa Barbara — daughter Gwendolyn was born healthy but was diagnosed with the terminal disease spinal muscular atrophy at 6 months old — has benefited from the implementation of this law, specifically the elimination of lifetime caps on coverage. A copy of Capps’ remarks is included below.

Click HERE or on the image below to read more or see below for the YouTube video of Capps’ remarks on the House floor…