Latest News: Information

Respond to PEEPs (Personal Emergency Evacuation Plans) Consultation

23 June 2021 / Posted in: Information, Support

The Government is running a consultation seeking views on new proposals to implement the Grenfell Tower Inquiry Phase 1 recommendations on 'PEEPs' in high-rise residential buildings. Claddag - a Leaseholder Disability Action Group - have put together some suggested responses to help if you'd like to respond to the consultation which closes on 19th July.

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Save the date: SMA Europe - 3rd International Scientific and Clinical Congress on SMA

21 June 2021 / Posted in: Information

SMA Europe has announced its third International Scientific and Clinical Congress on Spinal Muscular Atrophy, which will take place between 9th-11th February 2022 at the International Convention Centre (CCIB) in Barcelona, Spain.

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Contact: Write to the JVCI about Vaccines for Clinically Vulnerable Children

17 June 2021 / Posted in: Information, Support

National charity Contact have prepared a template letter for parents / carers who want the Joint Committee on Vaccination and Immunisation (JCVI) to recommend offering a Covid-19 vaccine as soon as possible to children with underlying health conditions / who are clinically vulnerable.

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Contact Survey: Counting the Costs 2021

15 June 2021 / Posted in: Information, Support

Contact is running this new survey to find out how the pandemic has affected your family finances and how you're feeling about your future family finances. It takes about 25 minutes to complete and there is an opportunity at the end to win one of three £100 vouchers. The deadline to complete is Wednesday 7 July at 9am.

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140+ Organisations Call on Government to put Children at the Heart of the Nation's Recovery

09 June 2021 / Posted in: Information, Support

Despite the Prime Minister’s pledges on Building Back Better and Levelling Up, the resignation of Sir Kevan Collins has highlighted a disturbing truth: supporting babies, children and young people to recover from the impact of the pandemic is still not a priority for Government investment. That’s why we’re joining the National Children’s Bureau and 140+ organisations in a call to Government to put babies, children and young people at the heart of COVID-19 recovery.

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Invitation to Parliamentary Meeting on Newborn Screening

28 May 2021 / Posted in: Information, Treatments & Research

On 9th June, the APPG on Rare, Genetic and Undiagnosed Conditions will be holding a meeting on newborn screening. The Newborn Screening Alliance is working with Genetic Alliance UK to improve access to newborn screening. You can ask your MP to attend: appg@geneticalliance.org.uk

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Protecting Disabled People From Fire

25 May 2021 / Posted in: Information

Following a request from a member of the SMA Community, we added our support to this open letter from Disability Rights UK to the Government requesting urgent action to: protect the lives of disabled people in the event of fire; prevent disabled leaseholders being forced to leave adapted homes; ensure that disabled leaseholders are not impacted by the costs of remedial safety works.

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Online Event: Periods and Disability, Impairments & Conditions

20 May 2021 / Posted in: Information, Support

Organised by environmental non-profit organisation City to Sea, this online event is taking place on Friday 28th May (Menstrual Health Day). The panel will be discussing periods, menstrual education and period products, through the lens of disability, impairments and conditions.

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Living With SMA Podcast - Episode #4 Out Now!

20 May 2021 / Posted in: Information, Support

In this episode - 'Adult Onset SMA' - SMA UK Host Martyn Sibley chats with Peter, who shares his personal journey to a diagnosis of SMA Type 4 in adulthood. Talking about how this ‘Adult Onset’ form of the condition has changed his life, Peter describes some of the challenges he’s faced and overcome and how he’s adapted to living with SMA.

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Survey Exploring Access to the Standards of Care for People who have SMA in the UK

10 May 2021 / Posted in: Information, Support

The John Walton Muscular Dystrophy Research Centre in Newcastle invites one respondent for each child / adult who has SMA to take part in gathering this important information that will help guide future practice.

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