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Are you:

  • reviewing your current home and thinking about making adaptions?
  • moving away from home for the first time?
  • looking for a new place to live?

We hope this checklist of things to think about and how to get the support you need will be useful.

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If you are looking for new options or have questions on these topics, you may find our information and links to organisations helpful

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Having SMA and becoming a parent

Josh, Molly and Julian each share their experiences of having SMA and becoming a parent in our Community Voices.

All families have challenges, both practical and emotional. Ups and downs aren’t unusual, but if they’re feeling unmanageable, it may be helpful to talk with someone other than family or friends.

Online groups and forums can provide peer support, tips and ideas for parents who have SMA.

Young Minds – online information and resources for parents and phone helpline for parents worried about a child or young person under 25 years.

Relate – support people to make the most of family relationships. Help for people of all ages, backgrounds, sexual orientations and gender identities to strengthen their relationships; information and offer family counselling.

In a conversation about their lives called ‘Hitting Our Forties‘, Toby (SMA UK Trustee) and Andi (from TreatSMA) talk about getting kicked out of university, mental health, treatment, work, healthcare, support and more…

Listen here >

You can join the Adults’ Network to meet up with people. There are many other virtual groups and networks on Facebook, WhatsApp and Instagram. We have listed a number of these on this Online Communities page.

You can listen to, watch or read what young people, adults and others have to say in Community Voices, Podcasts, Videos and Stories. Find out more.

Popular with many adults and families in the SMA Community, an assistance dog could help you with practical tasks, such as:

  • picking up dropped items such as your mobile, remote control or keys
  • opening and closing doors
  • helping with dressing and undressing
  • helping with physiotherapy routines
  • loading and emptying the washing machine
  • pressing the button at a pedestrian crossing
  • reaching up to shop-counters.

Registered assistance dogs should be allowed to go with their owner into many public places, such as shops, restaurants and to travel on public transport.

There is however a ‘but’, which is that an assistance dog is a serious commitment that needs a lot of thought and planning.

If you’re interested, there are several organisations that can give advice. Some train and provide their own dogs; others provide training for people who already have a pet dog. Each organisation has its own application process and training scheme and can give information and advice about the responsibilities of dog owners as well.

An assistance dog can provide loyal and unconditional friendship and company. They, and dogs in general, can also be a great ice breaker and way of meeting and talking to people when you’re out and about.

Animal Companions

You may decide that you don’t want an Assistance Dog but a well trained family dog can be a great addition and companion:

  • Sunny Every Day

In March 2018, Martyn and his fiancée, Kasia, got their dog Sunny – find out why they decided to go for it and what Sunny means to them.

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  • Marni – with Dylan the Goldendoodle & Buttercup the Chihuahua

Marni, who has SMA Type 2, shares what Dylan and Buttercup mean to her.

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  • Ross & Ralph

Ross, who has SMA Type 2, introduces his golden cockapoo called Ralph!

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