DBC Survey: Your Views on Increasing Legacy Benefits by £20 a Week

08 January 2021 / Posted in: Information, Support

In March, in response to Covid-19, the Government increased the standard rate of Universal Credit and working tax credits by £20 a week. The Government, however, has not increased ‘legacy benefits’ in the same way. The DBC is calling for urgent action to make sure the 2 million disabled people and others on legacy benefits are not left behind. Share your views on this in their survey, by 18th January.

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Information Statement about how Access to Nusinersen Treatment is Affected by COVID-19

08 January 2021 / Posted in: Treatments & Research

In April 2020, advice from clinical experts and discussions with the Patient Groups informed a statement from NICE, NHS England and NHS Improvement. NICE have reviewed this and confirm that the flexibility and guidance in this statement remains in place.

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Children with SMA and Covid 19 - Spanish Study

06 January 2021 / Posted in: Treatments & Research

A study by the Spanish Society for Pediatric Neurology of a small number of children with SMA who caught COVID-19 concludes that, "The course of COVID-19 in children with neuromuscular disorders may not be as severe as expected…". The authors do though advise that their study, "has several limitations worth noting”.

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Cambridge University Hospitals NHS Foundation Trust Joins the Risdiplam EAMS for Adults

23 December 2020 / Posted in: Treatments & Research

We are pleased to have received notice that the Trust’s Joint Drugs and Therapeutics Committee (JDTC) has now made this decision, joining more than 15 other Trusts prescribing risdiplam via the Early Access to Medicines Scheme. Adults, clinicians and patient groups worked hard to provide information to enable the Committee to reach this position.

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Roche - End of Year Summary

21 December 2020 / Posted in: Treatments & Research

Roche has provided SMA Europe with a summary of their global activities carried out this year which may be of interest. This includes information about the risdiplam clinical development programme and progress towards their goal of making risdiplam available to all patients who may benefit from the treatment.

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Survey from the British Paediatric Neurology Association

18 December 2020 / Posted in: Information, Support

The BPNA are asking us to share their survey so they can gain your valued views about the input of hospital doctors, specifically paediatric neurologists, who may be involved in providing medical care for your child. The survey takes around 3-5 minutes to complete.

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Star in the Rare Disease Day 2021 Video

17 December 2020 / Posted in: Information, Support

As part of the upcoming Rare Disease Day 2021, Rare Disease UK are making a video to capture the experiences of the rare community, so are asking you to send them your footage – moments of joy, tears, frustration and everything in between. Closing date for video submission is 13th January 2021.

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Family Fun Quiz!

15 December 2020 / Posted in: Information, Support

This Sunday 19th December, we're holding an interactive, multiple choice fun quiz! The quiz is free to join and anyone can take part, so we'd love to see as many of you there as possible in your Christmas jumpers or fancy dress. The winning household will receive a Christmas food hamper, so get those thinking caps on!

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Information and Support over the Christmas Break

14 December 2020 / Posted in: Information, Support

Our office will be closed from 3.30pm on Wednesday 23rd December 2020. We re-open on Monday 4th January 2021 at 9.00am. Here are links to where you can access support and information about SMA during this time.

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Apply Now For Leonard Cheshire's Change 100 Programme

11 December 2020 / Posted in: Information, Support

Change 100 is Leonard Cheshire's flagship programme of paid summer work placements, professional development and mentoring. It aims to remove barriers experienced by disabled people in the workplace, to allow them to achieve their potential. Applications close 7th January 2021.

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