Friday 26th September 

Guests are welcome to arrive from 4:30pm to check in and register. There is a bar and restaurant in the hotel, but drinks and food will not be provided for by SMA UK.

Saturday 27th September 

Clinical Information Day 

Download the Saturday agenda here 

Sunday 28th September 

SMA Community Day

Download the Sunday agenda here 

Community Panel Discussions – Sunday 28th September

Lets talk Sex and Relationships. (Please note: This session is for ages 16 and up only) 

Join us on Sunday 28th from 12pm-1pm, upstairs in the gallery suite, for a frank and open conversation that delves into what it means to build and sustain intimate relationships while living with Spinal Muscular Atrophy (SMA). In a society that often overlooks disability in discussions of sex and love, this panel offers a unique and vital space to listen, learn, and connect. 

Our panel features two disability advocates living with SMA: Luis Castro E Canto, and Hanna Litvinova. They’re here to share their personal journeys and challenge preconceived notions about intimacy, desire, and connection. From navigating physical challenges to communicating needs and embracing vulnerability, they’ll cover it all—without holding back. 

Joining them is Phil Kelly, a specialist nurse in SMA, who will provide valuable insights and practical guidance on the medical aspects of sexual health. 

This is a safe and welcoming space for anyone over 16 who wants to learn. We encourage you to come with an open mind and a willingness to explore. No topic is off-limits, and your questions are welcome. 

If you would like to submit and questions or topic areas that you would like to be covered in this session, then please submit them on this anonymous form.  

https://forms.office.com/e/WeYJxNU7T0 

Access to Education

Join us at our Big Weekend event on the morning of Sunday 28th September for a powerful and insightful panel discussion on navigating education with a physical disability.

This is a unique opportunity to hear directly from parents and young people who have first-hand experience of the UK’s education system, from nursery through to secondary school. Our panellists will share their personal journeys and discuss the challenges and triumphs of accessing mainstream education.

The conversation will cover crucial topics, including:

• The EHCP (Education, Health and Care Plan) application process and how to make it work for you.
• The realities of securing and managing 1:1 support in a school setting.
• The all-important social side of school – making friends and building a supportive network.

Whether you are a parent seeking guidance, a young person looking to connect with peers, or an educator wanting to understand more, this session will provide invaluable perspectives and a chance to ask your questions. Don’t miss this candid discussion from both parent and child viewpoints.

Luis Canto E Castro – Sex and Relationships
Luis Canto E Castro is an inclusion and accessibility professional and the founder of Unstoppable Living Ltd. Living with SMA Type 2 for forty years, thirty-five of them in South Africa, he grew up navigating environments that didn’t recognise disability at all. That reality forced a radical kind of resilience, owning his identity, claiming sexual agency and cultivating creativity to find his own way. A straight shooter with a solutions mindset, he works across workplaces and the built environment to move teams beyond “tick-box inclusion” to spaces and cultures where disabled people can thrive. Luis is also a firm believer that all individuals with disabilities should be able to experience and explore life intimately, socially and professionally. Expect warmth, candour and practical takeaways on boundaries, pleasure, dignity and design that actually works for real bodies and real lives. 

Hanna Litvinova – Sex and Relationships
Hanna is an artist and curator living in Nottingham, originally from Odesa, Ukraine. She lives with SMA Type 2 and works across painting and performance to explore disability representation. Hanna studies Fine Art at Nottingham Trent University and runs the YouTube channel, where she leads conversations about sexuality, disability, and art. Her interests include inclusive curation, rethinking art history through disabled perspectives, and building spaces of visibility and connection for disabled people.  

Phillip Kelly – Sex and Relationships
Phillip Kelly is a Neuromuscular Specialist Nurse and Care Advisor at the Northern Care Alliance NHS Foundation Trust, based at Salford Royal Hospital. He leads coordinated multidisciplinary care for adults with SMA and works closely with paediatric teams to ensure a smooth transition into adult healthcare services. Phillip’s work predominantly focuses on improving patient access to specialist care whilst supporting the long-term management of SMA.  Phil is keen to include open and honest conversations around sex and relationship as part of his support for people living with SMA in and around Salford.  

Amy Williams – Access to Education 
Amy is a mum to Ollie, a lively little boy with SMA Type 1. Ollie recently made the big move to mainstream reception, a major milestone after his time in preschool. His school days are supported by a dedicated 1-to-1 nurse and a range of medical equipment, all of which help him thrive in the classroom.

Amy recently navigated the challenging EHCP (Education, Health and Care Plan) process, a journey that included a successful appeal against the local authority’s initial decision. Her persistence and advocacy have been key to ensuring Ollie gets the support he needs to flourish in his education.

Portia Thorman – Access to Education 
Portia wears two hats: she’s the Head of Advocacy for SMA UK and a dedicated mum to eight-year-old Ezra, who has SMA Type 1. As an ex-primary school teacher, her professional expertise is deeply rooted in her personal journey of navigating the education system.

Portia has successfully championed Ezra’s inclusion in mainstream nursery and primary school, a process that required overcoming numerous barriers. She has been a fierce advocate, ensuring Ezra has the necessary support, including medical equipment, 1-to-1 nurses, and teaching assistant support. Through her flexible and creative problem-solving, Portia has crafted a path for Ezra that’s full of positive and fantastic school experiences.

Charlotte and Elsie Novell – Access to Education
Charlotte is not only a mum to 11-year-old Elsie, but she’s also an experienced secondary school teacher of 16 years. This dual perspective has been invaluable in navigating the EHCP process for Elsie, who has SMA Type 2. Now, as Elsie embarks on her mainstream secondary school journey, Charlotte’s professional insight and personal dedication are ensuring her daughter has a fantastic and fully supported experience.

Elsie herself will offer a powerful firsthand account of life as a student with a physical disability. She’ll speak openly about making friends and fitting in, share some brilliant ideas for inclusion, and offer tips on how she balances her school life with medical appointments.

Rachel and Matilda Jamieson – Access to Education 

Big Weekend Q&A