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EyeControl- Giving Voice To UK MND/ALS Patients

August 17, 2018
Your support of this campaign will allow us to gift EyeControl devices to people with ALS in the UK. Whatever amount is raised, we will match so that a person with ALS in your close community can enjoy state-of-the-art communication technology with their families and caregivers. You can choose to give EyeControl to a named individual (we will match your 1,000GBP) or choose to support a neighbour within your community. Any support is valuable – help us give a voice to the voiceless.

ALS is a vicious disease that eventually strips people of the ability to speak or move, though it does not affect a person’s cognitive abilities. 

People with ALS suffer from locked-in syndrome, a rare neurological disorder in which there is complete paralysis of all voluntary muscles except for the ones that control the movements of the eyes, making communication possible only through eye movements or blinking.

We decided to create a simple-to-use and more affordable device that gives locked-in patients a voice. The device does not require the use of a screen and has a short learning curve.

In August 2014 the Ice Bucket Challenge phenomenon raised millions towards ALS research and we would like August 2018 to be all about the gift of communication to people with ALS.

Your support of this campaign will allow us to gift an EyeControl device to a person with ALS. We will match all funds raised so that a person with ALS in your close community can enjoy state-of-the-art communication technology with their families and caregivers.

Powered by AI technology, EyeControl is a wearable healthtech device on a mission to give a voice to the voiceless.

As the world’s first wearable continuous communication device, EyeControl gives locked-in patients a renewed sense of independence by enabling them to constantly and easily communicate with their family, friends and caregivers. The screenless device utilizes an innovative eye-tracking technology to offer immediate, around-the-clock communication, and is simple to use. It provides a communication solution in crucial moments where no other options are available.

The EyeControl is the world’s first AI-powered, wearable eye tracking device, enabling 24/7 immediate communication and the ability to communicate in various situations that alternative solutions have not been able to accommodate. It enables patients to communicate immediately upon waking, while in the bathroom, indoors, outdoors and even while traveling. The EyeControl is screen free, which lowers the cost and is simple to use, requiring very little training time.

“It’s not easy being an ALS patient, but the most critical struggle is the struggle to communicate. Communication is a life saver.”    

– Shay Rishoni (1966-2018), former President of Prize4Life & EyeControl co-founder

We are excited to be working in conjunction with the local professional organizations in the UK who will nominate members in their region to receive a device.  You will have an option to choose your geographic region so that that a device goes to someone in your local community or you can choose to gift a device to a person with ALS in the UK.

 

If you know someone with ALS that you believe could benefit from the device – you can choose to gift a device specifically to them. Make sure to let us know so that we can make the proper arrangements.

We expect to begin distribution of the device by the end of this year.

Please help us give the gift of communication to people with ALS from your community.

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Autism Covered Up In Ethnic Minority Communities

August 16, 2018

The “taboo” subject of autism must be tackled in ethnic minority communities rather than ignored like a “disease”, one campaigner has said.

Hazel Lim believes it is almost seen as “contagious” while Race Council Cymru said families cover it up fearing it will affect marriage chances.

The National Autistic Society estimates there are 34,000 autistic people in Wales from all backgrounds.

However, it is thought there could be many more in minority communities.

Autism is a lifelong development disability which cannot be cured and affects how people see, hear and interact with the world.

“Many families with autistic children would prefer not to make it public because it affects your chances of making a good marriage,” said Race Council Cymru’s chief executive Uzo Iwobi.

“People judge you and the children are often picked on so it’s very, very difficult to find Black, Asian and Minority Ethnic families who want to talk about it openly.”

Ms Iwobi said parents and grass roots ethnic minority organisations need to be encouraged to talk about it more.

She said otherwise it will “always be a situation that is hidden in plain sight”, adding: “We should focus on this issue pertaining to ethnic minority communities because there is a specific need to have those families supported and encouraged to come out and talk about it and seek the help that they so desperately need.”

In Swansea, the Chinese Autism Support Group is aiming to improve knowledge and understanding.

It was set up by Hazel Lim, who has an autistic child and a masters degree in the condition.

“In the Chinese culture, autism is like a taboo – nobody even wants to mention it. It’s like a disease,” she said.

“Even by saying it, it can spread. They feel like it’s contagious. I think that’s down to the cultural perception.”

She said in China it is viewed “very negatively”, adding: “People who come to the UK, the Chinese who come here, when their children are diagnosed with autism they feel like that’s the end of the world.”

Ms Lim said language was the main barrier to overcoming issues, with most of the information available in English.

“They will not go out and ask people for help and to translate things for them because they feel like they are in a very vulnerable situation,” she added.

‘Cultural differences’

The group is supported by Race Council Cymru – which also wants to run autism awareness courses in Wrexham’s Portuguese community and the Somali community in Cardiff.

Meleri Thomas, from The National Autistic Society Cymru, said “language and cultural differences” made it hard.

She added: “Some of the families we’ve spoken to also feel that these difficulties were exacerbated by low levels of autism awareness in their own communities.”

The organisation has been campaigning for an Autism Bill for Wales, which would include mandatory training for professionals in autism, clearer access to diagnostic services and increasing public understanding.

A Welsh Government spokesman said it funds the National ASD Development Team, which has “developed a wide range of resources” to help tackle the issue.

He added all NHS service patients can access translation services.

Meet The 8-Year-Old Cystic Fibrosis Campaigner

August 16, 2018

An eight-year-old boy with cystic fibrosis has urged a pharmaceutical firm to lower the price of a drug so it can be made available on the NHS.

Luis Walker, from Horam, East Sussex, told Vertex Pharmaceuticals Orkambi would make him “feel much better”.

The National Institute for Health and Care Excellence (Nice) said the price offered by Vertex was unsustainable.

The Department of Health has called for a “speedy solution” to be found between NHS England and the firm.

In a handwritten letter to Rebecca Hunt, Vertex vice-president for corporate affairs, Luis wrote: “You have the medicine that can make me feel much better and not have to spend so much time in hospital please sell it to my country.

“If your son had cystic fibrosis I know you understand and lower the price of Orkambi.”

His mother, Christina, said: “It’s a really simple message, please lower the price so the NHS can afford it.

“Our children deserve the chance that everyone else has and they actually have it now with this drug.”

Orkambi was approved by the European Medicines Agency in November 2015 but an agreement on cost has not yet been reached with the NHS.

Ms Hunt said Vertex “shared the frustration” of Luis and the thousands of people in England waiting for access to the drug.

“We have spent every one of the thousand days since Orkambi was approved trying to get it to patients who need it; and again urge Simon Stevens (NHS England Chief Executive) to come to the table so patients in England don’t have to wait any longer,” she said.

But last month, Health Secretary Matt Hancock urged Vertex to break the “impasse”, telling the House of Commons NHS England had made a “very generous final offer” to the company.

NHS England said it had proposed a five-year deal which provided the potential for Vertex to secure revenues from the NHS in the region of £500m over the next five years and in excess of £1bn over the next 10 years.

In a letter to the Cystic Fibrosis Trust on 16 July, NHS England National Director John Stewart said he hoped “Vertex chooses to act responsibly and accept this deal and take advantage of the significant flexibilities the NHS is offering”.

In May, Luis was among hundreds of children suffering from cystic fibrosis who wrote to Prime Minister Theresa May pleading for the life-changing drug.

Ms Walker said that since then he had lost 13% lung function, but doctors believe Orkambi would help slow further decline.

Orkambi has been shown in clinical trials to improve lung function and respiratory symptoms in people with the life-shortening condition, and is thought to be appropriate for about 50% of sufferers.

PIP Stopped On Review? Two New Legal Protections

August 15, 2018

Universal Credit: The Truth About Advances

August 14, 2018

UK Supermarkets Discriminate Against The Poor With The Online Minimum Spend

August 14, 2018

BBC’s Leading Lady Shorts Didn’t Represent Disability Says Sam Renke

August 14, 2018