Health & Wellbeing - Recordings

Risdiplam - Live recording from 10th December 2021

This webinar, with an expert panel:

  • Prof. Muntoni (Consultant Paediatric Neurologist, GOSH);
  • Dr. Chiara Marini Bettolo (Consultant Paediatric and Adult Neurologist, Newcastle);
  • and Fiona Marley (Head of Highly Specialised Commissioning, NHS England & Improvement)

covered the planned roll-out of the programme in England and answers many questions the Community has been asking:

More information about risidiplam

Zolgensma: 6 Months On - Recorded November 2021

In this webinar, Imelda Hughes (Paediatric Neurology Consultant), Gary McCullagh (Paediatric Neurology Consultant) and Fiona Marley (NHS England) talk to Liz Ryburn, SMA UK’s Support Team Manager, about Zolgensma treatment and what's been happening in the past six months since treatment began in England.

More information about Zolgensma

Zolgensma Treatment for SMA Type 1 in the UK - recorded 21st April 2021

In this informative webinar about the treatment itself and what is going on to progress access (particularly in England), SMA UK Host Martyn Sibley talks to Prof Francesco Muntoni (Consultant Paediatric Neurologist, GOSH), Dr Anne-Marie Childs (Consultant Paediatric Neurologist, Leeds) and Fiona Marley (Head of Highly Specialised Commissioning, NHS England).

More information about Zolgensma

Respiratory - Cough Assist for older children/teenagers

SMA UK Host Martyn Sibley talks to Professor Anita K Simonds (Honorary Consultant in Respiratory & Sleep Medicine - Royal Brompton & Harefield NHS Foundation Trust) and Dr Michelle Chatwin (Consultant Physiotherapist - Royal Brompton & Harefield NHS Foundation Trust) about the basics of cough assist and the practical details involved.

Respiratory - Cough Assist for Younger Children

SMA UK Host Martyn Sibley talks to Lisa Edel (Specialist Respiratory Physiotherapist - Great Ormond Street Hospital for Children NHS Foundation Trust) to share some of the latest information and insights around cough assist for younger children.

Posture, Movement. Exercise

Lindsey Pallant (Clinical Specialist Physiotherapist at Leeds General Infirmary) and Felicity Vann (Senior Specialist Paediatric Physiotherapist at Evelina London Children's Hospital) talk to Martyn Sibley about Posture, Movement and Exercise for individuals with SMA and focus on functional abilities, contractures and posture management.

Virtual assessments for children who are able to walk and are / will be receiving nusinersen treatment

Consultant Paediatric Neurologist Anne-Marie Childs and Clinical Specialist Physiotherapist Lindsey Pallant from Leeds General Infirmary talk to Martyn Sibley about this, and answer questions about coming to clinic.

An update on access to nusinersen treatment for adults and the chance to ask questions

Martyn Sibley talks with Ros Quinlivan and Chiara Marini-Bettolo, consultant neurologists; Robert Muni-Lofra and Anna Mayhew, consultant physiotherapists; Fiona Marley, Head of Highly Specialised Commissioning at NHS England.

FOLLOW-UP Q&AS

Virtual assessments for children who are able to sit and are / will be receiving nusinersen treatment

Dr Elizabeth Wraige, Consultant Paediatric Neurologist, and Felicity Vann, Senior Specialist Paediatric Physiotherapist, talk with Martyn Sibley and answer questions about coming to clinic. 

Virtual assessments for children who are unable to sit and are / will be receiving nusinersen treatment

Professor Francesco Muntoni and Marion Main, consultant physiotherapist talk with Martyn Sibley and answer questions about coming to clinic.