Information

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.

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.

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.

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.

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

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