Consultations, Campaigns & petitions
We believe it is your right to see a request and for you to decide whether or not you agree with the aims and wish to respond. Please be aware that the posting of these requests does not necessarily mean we agree with their purpose. If you do respond, we ask you to be clear that you are speaking personally and not on behalf of SMA Support UK.
You may wish to see our advice checklist before making a decision about participating:
Housing for Disabled People - Have Your Say
The Equality and Human Rights Commision want to hear from disabled people to understand whether the availability of accessible and adaptable housing, and the support services around it, fulfils disabled people’s rights to live independently.
Campaign to Improve School Transport
Contact a Family have launched their biggest inquiry into school transport for disabled children, and they want to hear from you. Take part in their survey to share your experiences, both positive and negative.
Turn2us - 'No Cold Homes' Campaign
Turn2us' poverty campaign, No Cold Homes, is running throughout the Winter and they are promoting the support available for people who can’t afford to heat their homes.
Can you Help Describe the Experience of Living with SMA?
Individuals with SMA and caregivers are wanted by Adelphi Values to take part in a one-hour phone interview about their experience of SMA. Participants will receive £50.
Views Sought On The Use Of Non-Invasive Prenatal Testing (NIPT)
The Nuffield Council on Bioethics is thinking about the ethical issues raised by NIPT and would like to talk to people over 18 who have SMA about their views on current and future uses of NIPT.
Petition To Change Law
Steven has SMA Type 2 and is abroad for a year as part of his University studies. As he is leaving the UK for more than 13 weeks, the DWP has told him that after that time he is no longer entitled to his motability vehicle.
Sign his petition requesting a review of this regulation here.
Call For Evidence
This is your opportunity to have a say on disabled people's rights under the UN Convention on the Rights of Persons with Disabilities.
In 2017 the United Nations Committee on the Rights of Persons with Disabilities will examine how well the UK government is doing at promoting, protecting and ensuring disabled people’s human rights. Disability Rights UK is helping to carry out this task and is seeking evidence and insight from disabled people and their organisations in the UK. You can contribute by completing an online survey.
Disabled Facilities Grants Petition Launched
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.
PIP: Second Independent Review Call For Evidence
The Department for Work and Pensions has appointed Paul Gray to undertake the second independent review of the Personal Independence Payment (PIP) assessment. This consultation closes on Tuesday 6th September 2016 at 5:00pm.
Campaign To Increase Carer’s Allowance Earnings Threshold
Contact a Family is asking people to sign an open letter calling on the government to make this increase to stop carers losing out on support.
How Can The Government Improve Help For Carers?
The Department of Health wants to hear from anyone who cares for a family member or friend, anyone who has someone to care for them and from professionals. This is to help them develop a new strategy.
Halving The Disability Employment Gap
The All Party Parliamentary Group on Disability invites written submissions to inform its inquiry into how the Government can fulfil this pledge. Closing date 4 July 2016.
Survey To Identify Gaps In NHS Care
MDUK is gathering information about what support people with muscle-wasting conditions are accessing, to help them identify issues to assist with campaigning for better care.
Young Disabled Volunteers Aged 18-29 Wanted For 'I Can Make It' Campaign
Join people like Jasmine in this Disability Rights UK campaign funded by Comic Relief. Run by and for young disabled volunteers, this project aims to smash barriers to employment and create better job opportunities. You can find out more about the campaign by clicking on the link below:
Turn2Us Launches Its Benefits Aware Campaign
Find out what support you’re entitled to today and read the results of their research which show that 25% of people with a disability feel the welfare changes make it difficult to apply.
Petition to make Nusinersen available
This petition has been set up by a parent who wants to see this drug made available to children with SMA at the earliest possible time.
This petition is calling for airlines to allow designated wheelchair accessible spaces on commercial flights. It runs for 6 months and has a deadline of 24th September 2016.
Contact a Family: Campaign Against Cuts To Short Breaks
Contact a Family have found worrying evidence of cuts to crucial short breaks (respite) services in many local areas and they are calling on supporters to send their template email to their local council to help protect the future of short breaks for families.
Trailblazers Media Representation Campaign
Trailblazers want to find out what you think about the way in which disabled people are portrayed in the media and what you think needs to be done to improve these representations. The survey is open to young disabled people up to the age of 35 years and closes on Monday 25th April 2016.
Cello Health Insight International Market Research Project
The interviews, being carried out on behalf of a pharmaceutical company, wish to explore the experiences of people living with / caring for someone with SMA Type 2 or Type 3, including their journey from initial symptoms, through diagnosis and ongoing management.
Reproductive Choices in Families with SMA – A Survey
Families are invited to participate in a US based research survey looking at reproductive choices in families with SMA, specifically in regards to choices surrounding preimplantation genetic diagnosis. The researchers are hoping that the survey can help identify barriers families with SMA face in accessing reproductive options such as PGD and that it will be of international interest. The closing date for completing the survey is 15th May.
Wheelpower – British Wheelchair Sport Survey
Wheelpower want to find out what can be done to help more people who use wheelchairs in everyday life or would use one for sport to lead healthy active lives and take part in sport. Closing date is 6th May 2016.
Eurordis (European Organisation for Rare Diseases) Needs Your Expertise
Eurordis is conducting a survey in an effort to better understand how well people are engaged in decisions about their medical care
'Get On Board' Campaign - Whizz Kidz
Whizz Kidz know the accessibility of transport is a massive issue for young wheelchair users and over the next two years they are calling on you to play your role on the journey to inclusive travel.
Bad Info = Bad Health?
Can you help a PhD researcher who is trying to find out what happens to bad information that is posted on online discussion forums. Do you regularly use online health discussion forums to talk about your or your child’s condition? If so, you may be able to help out with this academic study.
Contact a Family's Petition to Oppose Cuts
Contact a Family are currently running a campaign on tax credits and a petition against the cuts which will come into force next year.
Petition to Chairman of the Board and Chief Executive Officer - ISIS Pharmaceuticals to apply for accelerated approval of ISIS-SMNRx for SMA
This petition has been initiated by The Fast Movement
For latest information about ISIS-SMNRx and the current developmental status of the drug please click here.
Access the petition by clicking here.
What is your view of genetic editing technologies?
Genetic Alliance UK want to know how those affected by genetic conditions feel about the use of gene editing technologies in different circumstances. Click on the link below to find out more and to take part in their 20 minute survey.
Breaking point: the crisis in accessible housing and adaptations
Local authorities are failing to act on a mounting housing crisis in adaptations and accessible housing for people with muscle-wasting conditions, Muscular Dystrophy UK has warned in a new report. You can join their campaign, write to your MP and tweet your support.
Petition to ensure equality of access to disabled toilets for all by making the provision of changing places toilets mandatory
Taken from the petition page: "Sign and share if you think that changing benches and hoists should be provided in public disabled toilets for all those disabled users who cannot sit on a toilet and whose usual option currently is to be changed on the floor or stay at home."
Survey for Rare Disease Patients
Genetic Alliance’s initiative, Rare Disease UK, has launched a survey into patient experiences of rare (including genetic) and undiagnosed conditions to inform the influencing and campaigning work they do.
All Party Parliamentary Group On Rare, Genetic and Undiagnosed Conditions
Genetic Alliance UK is asking for your help to set up an All Party Parliamentary Group on rare, genetic and undiagnosed conditions.
Together for Short Lives: Views of Children and Young People
Together for Short Lives are being commissioned by NICE (National Institute for Health and Care Excellence) to run a series of focus groups for children and young people aged up to 18 to hear their views about the services that they use.
Share your views on news articles featuring disabled people involved in sport and activity
The English Federation of Disability Sport (EFDS), supported by Sport England, is embarking on a new project to improve public perceptions of disabled people in sport and activity. You can take part in their online survey.
Oracle Fieldwork: New SMA Consultation
Families are being invited to test a questionnaire, from market research company Oracle Fieldwork, that may be used in the future in clinical settings such as hospitals and out-patient clinics.
Disabled Students in Higher Education: Consultation on Funding
The Government is undertaking a consultation to gain information to help them direct the funding for disabled students in higher education more effectively. The deadline for taking part is 24th September 2015.
We are supporting the Right Chair, Right Time, Right Now Campaign
Individuals, families and professionals, please join us. Pledge your support to the charter and write to your MP and Clinical Commissioning Group.
Levelling the Playing Field: The Childcare Campaign for Disabled Children
While many parents with disabled children juggle jobs with complex care arrangements against the odds, too often they are forced to cut hours or give up careers due to childcare problems. Click on the link below to find out more about this campaign from Contact a Family:
Family Support Census
Please respond to this questionnaire from Every Disabled Child Matters and Contact A Family. The deadline is the 30th June 2015.
They want to know about changes to local services and support for families with disabled children across the UK. They would also like to find out how the changes are affecting your family life.
GKA invites you to participate in their latest medical market research study
GKA are conducting face to face interviews throughout May and June with individuals and their care-givers who are willing to share their experiences of living with a neuromuscular condition.
They write: “Understanding the ‘patient perspective’ is of paramount importance for the Pharmaceutical industry and by taking part, it gives you the chance to help shape the future of medicine.”
APPG – survey to set the agenda for parliamentary group
Deadline to complete the survey is Friday 29th May.
The All Party Parliamentary Group (APPG) for Muscular Dystrophy raises awareness of all types of muscle-wasting conditions. Muscular Dystrophy UK want to know what topics and issues matter to you. Complete the survey by 29th May
The Council for Disabled Children: Young People's Advisory Group
If you are a disabled young person or a young person with Special Educational Needs and are aged 13-23 and are living in England,
The Council for Disabled Children (CDC) wants to hear what issues are important to you.
Closing date for expressions of interest is 1st May 2015.
'Question your election candidates'
Every Disabled Child Matters (EDCM) has put together key statistics and questions to ask: "Right from the Start: What we want from the next Government".
Contact a Family
CAF are running a campaign to get energy companies to provide more assistance and the UK government to make benefit changes to help families with a disabled child.
Disability Living Allowance
Challenge the rule that takes away DLA when a child is in hospital:
'Life to the Full' Survey Response Request
To be completed by 16th March 2015. The aims of the research are to increase funding to the sector, influence government policy, and improve services for these families.
Every Disabled Child Matters (EDCM)
EDCM is asking you to contact your MP to help raise the voice of families with disabled children so that they are not forgotten by the next Government.
Rare Disease UK's contact campaign needs your help
It's been a year since the publication of the UK Strategy for Rare Diseases. There's been much progress - but to keep up the momentum RDUK needs you to write to your MP.
Counting the Costs Survey and Campaign
Contact a Family’s 2014 survey found that increased living costs and cuts to financial support have left some families under huge financial, emotional and mental strain affecting their health, relationships and in some cases worsening their child's condition.
They are asking you to write to your MP to make sure this stops
Anti-bullying week 2014
17-21 November 2014
This is a week where children and young people, schools, parents and carers come together with one aim: to stop bullying.
Access to Specialist Care: Have Your Say
The All Party Parliamentary Group for Muscular Dystrophy is launching an inquiry into the impact of NHS reforms on the delivery of specialist neuromuscular care across the UK. This is a great opportunity to identify where gaps still exist across England. The MDC is collating feedback. Please let them know about your experience of accessing specialist neuromuscular care in your region by 25th January 2015
The SMA Screening Survey UK
The imagining Futures Research Project survey further explores how families living with SMA feel about screening.
Review of Personal Independence Payments (PIP)
The Department of Work and Pensions is seeking feedback from individuals and organisations on how the assessment process is working. If you have any views or relevant information they would like to hear from you.
Are you facing difficulties accessing your treatment?
The European Organisation for Rare Diseases (EURORDIS) is a non-governmental patient-driven alliance of organisations and individuals active in the field of rare diseases in Europe. It is seeking information so that it can report problems to the various European National Health Authorities and engage in a dialogue with them.
Make disabled children a priority in the new health system
EDCM (Every Disabled Child Matters) needs your support to help them make the case, that meeting the needs of disabled children, young people and their families must be a local priority for the new health and care system.