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Last updated: 1st July 2024


We work closely with the SMA community and many partner charities monitoring Government strategies, reports and plans .  We bridge the gap between people living their lives with SMA and the organisations that can make a difference. Many issues impact on all the disabled community. We run surveys and collate experiences and let the community know about consultations they may wish to respond to directly.


Latest surveys and consultations >

The charity Contact launched its campaign which we shared with the SMA Community for families to get involved.

Read more >

June 2024

In the run up to the General Election, Genetic Alliance have launched their Pledge for People with Genetic, Rare and Undiagnosed Conditions campaign calling on all candidates to say:

If I am elected, I will support people living with genetic, rare and undiagnosed conditions by:

  • Helping people get a timely and accurate diagnosis
  • Raising awareness of these conditions within the NHS
  • Ensuring people have access to coordinated care
  • Improving access to specialist care and treatment

As members of the Alliance we have asked the SMA community get behind the campaign and contact their MPs.

Read more on the Genetic Alliance website >


As members of the Disabled Childrens Partnership we are delighted to share the launch of their 2024 manifesto.

They are calling on the next government to:

  • Make disabled children a priority. Those at the heart of politics need to prioritise the needs of disabled children and their families and to acknowledge disabled children and their families as equal, valued members of society. We want all parties to commit to the appointment of a Minister for Disabled Children and to producing a cross party disabled children’s strategy. 
  • Clarify and enforce rights, and review the law. The next Government must commit to stronger accountability within the SEND system; to making the education system inclusive; and to ensuring that disabled children and young people receive the support they need across the education, health and social care systems. 
  • Address funding shortfalls and create a dedicated fund for disabled children. Making disabled children the priority and having a system that is fit for purpose with effective accountability will help make this happen; but the right level of funding is also vital.

You can read the full manifesto here

Or download a copy DCP MANIFESTO 2024

As supporters of the campaign, we wanted to share with you our recently published joint statement following Labour’s pledge to tackle child health inequality.

This is an important development, and we welcome Labour’s focus on tackling child health inequality and the recognition that a child’s wellbeing is shaped by their mental health as well as their physical health.

Launch event 24th January 2024

The event was hosted by Tim Loughton MP and Emma Lewell-Buck MP, with a moving speech by Baroness Floella Benjamin, and was attended by 27 young people from across the UK.  We were thrilled to bring young people to Parliament to engage with high-profile political decision-makers at a really inspiring event.

How you can support this campaign

Ahead of an upcoming general election, the UK’s five leading children’s charities – Action for Children, Barnardo’s, The Children’s Society, the National Children’s Bureau and NSPCC – have joined together, to make sure the next government has a plan to make decisions for babies, children and young people with children at the table.

Support this campaign with us by signing the petition to put children’s needs and voices at the heart of decision making.

Sign now 


At SMA UK we understand that disabled individuals and their households have, on average, lower incomes than their non-disabled counterparts.

Often incurring additional costs related to their treatment and disability as well as spending more on energy, travel and the current surge of inflation.

We are working with partners to raise awareness of the issues facing the SMA Community:

Kim Gabriel, mum to Rocco, aged 5 who has SMA Type 1 and lives with his four siblings, has really felt the impact of the rise in the cost of living. With her energy bills more than doubling, she has had to rely on charitable support to keep up with the demands of her growing family as well as Rocco’s complex needs:

“The cost of living has never affected vulnerable families more, my child is reliant on five life-saving machines every night, if I can’t afford to pay the bills what do I do?

I have had to cut down on my food shopping and family days out would be a thing of the past if it wasn’t for the support of our local children’s hospice and charities.”

Independent living is being made more difficult with the added pressure from the rises in the cost of living. As Adele Farquhar told us:

“With my personal assistant, I always have two people in the house, using more energy, water and food than I would if I was a single woman living without a disability.

SMA comes with specific challenges, I can’t just layer up if the house is cold as it impacts my mobility and, of course, I can’t get up and move around more to keep warm so I have to have the heating on.

My energy costs have doubled, and I can’t not use my mobile hoist or my profiling bed, and, I have to charge my powerchair. It feels like because we are in the minority, the government don’t appear to have thought carefully enough about the disproportionate impact the cost of living has on the disabled community.”

Over 1,000 people took part in Genetic Alliance UK’s survey about the impact of living with a rare condition which were published in BMC Health Services Journal. The findings were stark, and enabled them to develop specific recommendations for improved support.

Read the online report >

Read the pdf report >