Latest News: Support

Community Connections: 'PARENTS! Ask Us Anything'

23 October 2020 / Posted in: Information, Support

If you're a parent of a child, teenager or young adult with SMA and there’s something that you’ve wanted to know but you’ve been too anxious, or you’ve just never had the opportunity, to ask a young adult with SMA, this is your chance! Jordanne and Josh are here to answer your questions. Please send them in by 31st October.

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Kidz to Adults - From Venue Floor to Virtual Tour!

12 October 2020 / Posted in: Information, Support

As for the first time in almost 20 years Kidz to Adultz are unable to be on the exhibition floor, they've launched: Venue to Virtual (9th-13th November). The online platform offers visitors free virtual access to many exhibitors, companies, voluntary and support organisations.

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#GiveMeABreak Campaign - Together for Short Lives

07 October 2020 / Posted in: Information, Support

Together for Short Lives is asking families in England to write to their local MP to ask them to contact Chancellor Rishi Sunak about funding short breaks. This follows a report which shows the positive impact that short breaks have for families.

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“Think 3” Awareness Campaign Launched Today for Parents and Carers

06 October 2020 / Posted in: Information, Support

This campaign aims to raise awareness of three motor developmental milestones that babies are expected to reach at up to 3 months of age so that those not reaching them are identified and referred quickly; this could be signs of SMA or another neuromuscular condition.

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Disabled Children and Young People Entitled to Free Flu Jab this Winter

30 September 2020 / Posted in: Information, Support

Winter is coming, and at-risk groups entitled to a free flu vaccination this year include children, carers, people with learning disabilities and adults with long-term health and medical conditions.

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Baby Loss Awareness Week: 9th-15th October

23 September 2020 / Posted in: Information, Support

This year, the theme is highlighting the isolation many people experience after pregnancy and baby loss – women, partners, other family members and friends. The effect of social distancing from Covid-19 has had a major impact on access to care and support and has complicated grief and responses to pregnancy and baby loss.

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DCP - Back to School Survey

21 September 2020 / Posted in: Information, Support

Following the success of the Disabled Children's Partnership's survey in the spring about being #LeftinLockdown, they have launched this new survey to gather information on how the return to school has gone for disabled children. Deadline to take part is 5th October.

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COVID-19 - Survey on Flying with a Disability

21 September 2020 / Posted in: Information, Support

Josh Wintersgill, who has SMA, is the founder and director of easyTravelseat. They are running a survey to gather views around how disabled people feel about flying in the current climate, and to find out more about the impact that Covid-19 has had.

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Left In Lockdown - DCP Survey Results

15 September 2020 / Posted in: Information, Support

Back in May, the Disabled Children's Partnership ran a survey to understand more about the impact the coronavirus pandemic and lockdown was having on disabled children and young people, their siblings and parents. Over 4,000 people completed the survey. Read about the results.

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Muscular Dystrophy UK - SMA Seminar

14 September 2020 / Posted in: Information, Treatments & Research, Support

The first seminar of their 'MDUK Muscles Matter 2020' series took place during SMA Awareness Month and was an update on research into SMA and a panel discussion on potential treatments and managing the condition. Watch it here.

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