Latest News: Information

Shared Experience Family Event - Midlands

22 October 2019 / Posted in: Information, Support

Bookings have now closed for this event but if you're interested in attending and wish to see if there are still spaces to do so, please contact the office asap on 01789 267520.

Read full story

Three ‘Pillars’ to Deliver Better Support and Care for Disabled Children and Their Families

10 October 2019 / Posted in: Information, Support

The Disabled Children's Partnership, of which we are members, have identified three pillars to underpin and ensure improved support for disabled children and their families. Read more in this blog from Stephen Kingdom, DCP Campaign Manager.

Read full story

Children who have SMA Wanted for Interview about New Product Development

10 October 2019 / Posted in: Information, Support

Healthcare Fieldwork's client are looking to interview children who have SMA and who are aged between 5-15 years old (and parents / carers) at their offices in Cambridge. Participants will receive £120 as a thank you for taking part.

Read full story

Patients & Public Wanted To Help With Research About Swallowing Disorders In Neuromuscular Conditions

08 October 2019 / Posted in: Information, Treatments & Research

The purpose of this study is to help find out what the priorities are for people with a neuromuscular condition who have swallowing difficulties, and the experiences of family members and carers. The first meeting has been set for 25th October so if you'd like to register your interest, please do so as soon as possible.

Read full story

Quicksilver Media Looking For Families Accessing Spinraza To Take Part In Documentary

25 September 2019 / Posted in: Information, Treatments & Research, Support

Quicksilver media are currently making a documentary about the possible implications for drug budgets of any UK-US trade deal, for Channel 4's Dispatches strand, and are looking for families with children who have recently (within the last 4 months) started treatment with Spinraza / nusinersen.

Read full story

SMA Matters Autumn 2019

16 September 2019 / Posted in: Information, Support

This edition, and previous editions, of our SMA Matters newsletter are now available to download from our website.

Read full story

Survey About Your Child’s Experience Of Sport & Activity

12 September 2019 / Posted in: Information, Support

Activity Alliance, a national charity, wants to hear from parents and disabled children about their experience of sport and activity.

Read full story

Living With SMA Launched!

02 September 2019 / Posted in: Information, Support

We’re delighted to announce the launch of this brand-new section of our website. It builds on knowledge and advice from the SMA Community and SMA UK’s Support Services Team, and covers a whole host of topics. If you have tips, stories and photos you’d like us to add, please do get in touch and share your experiences.

Read full story

Please Help Us To Find Suitable Event Venues

28 August 2019 / Posted in: Information

We're in the process of trying to find new accessible venues for all our events, so if you know of any that we can check out, please do let us know. Find out more here about the sort of venue / facilities we need.

Read full story

Do You Know Someone Who Deserves or Needs a Brand-New Garden Makeover?

13 August 2019 / Posted in: Information

ITV1's garden makeover show 'Love Your Garden with Alan Titchmarsh' is back in Autumn 2019. They're looking for families / individuals to apply or nominate someone who could benefit. Closing date 30th September.

Read full story