Tofersen approved in the United States

In April, Tofersen was approved for the treatment of SOD1 MND in the United States, under the name Qalsody. Tofersen has been specifically developed for MND caused by mistakes in the SOD1 gene, which accounts for around 2% of MND cases.

The approval of Tofersen is a welcome step forward in the fight against MND and provides hope for the pathway to approval for other genetic treatments under investigation in clinical trials.

Tofersen is not currently approved in the UK. The European Medicines Agency (EMA), which approves drugs for use in the EU, including Northern Ireland, is reviewing the data. Since Brexit, the UK Dr Andrew Tossolini,

London regulator can rely on regulatory decisions taken by the EMA. It is expected that any treatments must also be assessed by the decision about the approval of Tofersen by National Institute for Health and Care the EMA will be reflected in Great Britain. Excellence to determine if the treatment Regulatory approval is only the first is cost effective. Tofersen is currently in the hurdle to overcome for a new treatment early stages of this process. to be prescribed on the NHS. New None of this progress would be possible

Care information update

Social care resources

Having your needs assessed through adult social care services can help you access services, information and more.

Our revised animation What is social care? can be found along with other introductory animations at www.mndassociation.org/animations

Our revised information sheet 10B – What is social care? can be found in our list of information sheets at www. mndassociation.org/careinfo

6A – Physiotherapy and exercise with MND

This sheet has been updated. Exercise cannot reverse the impact of MND, but it can help with flexibility and to strengthen muscles not yet affected. Find this sheet, and more about movement and mobility at www.mndassociation.org/mobility

MND Buddies

Our activity hub for young children can help them learn about MND, through gentle stories, games and things to do. This hub has been checked and updated. We love receiving artwork, poems and short stories from children aged from four to 10 to display in the hub galleries. Go to the See it pages to find out more, at: www.mndbuddies.org

Safety at home web page

See our new page about keeping safe at home with MND or Kennedy’s disease at www.mndassociation.org/safety

You can read more about this in our article on page 32.

Revised information for professionals

We also offer resources to health and social care professionals, to help them provide tailored support. The following

Would you like to help with our information development?

without the continued support of the MND community, the dedication of researchers and generosity of people living with MND, their families and carers. Find out more about Tofersen on our blog: www.mndassoc.org/tofersenapproval items have been updated:

• Supporting children and young people

• P3 – Saliva control

• P5 – Providing medical evidence

• P9 – Oral suction

See all of our resources including those for professionals and researchers at: www.mndassociation.org/publications or order printed copies from our MND Connect helpline: 0808 802 6262, mndconnect@mndassociation.org

Trusted Information Creator

Our information development is accredited through the PIF Tick scheme. This means our resources are evidenced, user tested and reviewed by experts.

We work alongside people with MND or Kennedy’s disease, and their carers, to develop and improve our information. We have lots of work ongoing in 2023. If you would like to get involved we would love to hear from you. You can pick and choose which tasks you want to work on and make a difference from the comfort of your own home. To find out more, contact: infofeedback@mndassociation.org