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ENDEAR clinical trial update

16 September 2016 / Posted in: Information & Support, Research

Principle Investigators in London and Newcastle have released this statement.

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The Basic Cellular Process Of Endocytosis Is Impaired In SMA Models

13 September 2016 / Posted in: Research

Thanks to two recently published scientific studies, we can now add endocytosis to the ever-growing list of pathways that the SMN protein is involved in.

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Call For Evidence

07 September 2016 / Posted in: Information & Support

This is your opportunity to have a say on disabled people's rights under the United Nations Convention on the Rights of Persons with Disabilities.

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Supporter of the Month: August 2016 Supporter of the Month: August 2016

25 August 2016 / Posted in: Our Community

This month we would like to congratulate 8 year old, Jay Pickston. Jay’s school took part in Shoesday 12th July and raised an incredible £280!

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Disabled Facilities Grants Petition Launched

25 August 2016 / Posted in: Information & Support

Following discoveries made by Disability United's Editor, Fleur Perry, a petition has been launched to make sure that all disabled people can have the adaptations they need.

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Illustrator Needed! Illustrator Needed!

24 August 2016 / Posted in: Our Community

We are looking for an illustrator to work with SMA Support UK on a children’s book about SMA Type 3 aimed at 8 to 12 year olds.

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Adult Onset SMA Route Map

19 August 2016 / Posted in: Information & Support

The Adult Onset SMA Route Map has been published! It has been written for individuals, families and professionals and it contains information on health, sources of support, and daily living topics.

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Update on Novartis drug LMI070

18 August 2016 / Posted in: Research

The pharmaceutical company Novartis have recently provided an update on their SMN2 splice-modifying drug LMI070.

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Avexis Provides Update on Ongoing AVXS-101 Trial

18 August 2016 / Posted in: Research

Avexis has released new information on their ongoing Phase I clinical trial of their gene therapy drug for SMA, AVXS-101.

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New Information Leaflet: 'Family Experiences of Bereavement'

16 August 2016 / Posted in: Information & Support

This leaflet shares the experiences of families whose child with Spinal Muscular Atrophy has died. They talk about their personal experience of grief and how they cope with bereavement.

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