Barrow and Furness MP Michelle Scrogham has joined forces with the Furness and District Motor Neurone Disease Support and Fundraising Group to obtain crucial treatment for one of its members.

Stephanie Eva, a fit woman in the prime of her life who would think nothing of running up some of the Lake District’s most testing fellsides, started to experience muscle weakness and was subsequently diagnosed with the SOD1 genetic variant of Motor Neurone Disease.

There is hope for slowing down the condition for the two percent of people diagnosed with the SOD1 MND in the form of a new breakthrough drug called Tofersen, which has been developed by the pharmaceutical company Biogen. 

Biogen are providing the drug for free through their Early Access Programme, but unfortunately access to the treatment is severely limited by NHS delivery capacity. 

It requires administration through lumbar puncture which can only be carried out at specialist centres.  

This situation means 30 patients in the UK are currently receiving treatment but approximately 20 others are not being given it, with Mrs Eva among them. 

After meeting the support group at the Barrow and District Disability Association headquarters in the town on Friday, July 11, Mrs Scrogham pledged to help. 

The Barrow and Furness MP said: “To be denied access to the drug that can help her is simply wrong and I will be supporting this campaign.

“I’m more than happy to do whatever I can and I will happily take it up in parliament.”

Mrs Scrogham is hoping to obtain a meeting with Health Secretary Wes Streeting to put the issue on his radar.

A group statement said: “Furness MND Support and Fundraising Group and Julia from Team Steffi really appreciate Michelle coming to our meeting and getting on board with this very important campaign.”

Mrs Eva said: “I really don’t have time to wait. Everyday my disease is progressing and my quality of life is deteriorating. It’s an awful disease.

“Tofersen has given me hope where there was none, and to find that I cannot have it is very hard to accept.”