Hope Beyond Borders: A Second Chance in Germany

Our Story

We are raising funds for essential, specialised medical treatment only available to Seckin in Germany. The treatment known as Tofersen/Qualsody offers a chance not only of valuable more time, but an improved quality of life, which is currently not possible yet in the UK for Seckin, as she lives in the wrong Post Code and has been told there is no capacity in ANY MND centre for her.

Life can change in an instant. Seckin has been bravely living with Motor Neurone Disease (MND) for two and a half years.

Despite every effort over the past year to access the Tofersen Early Access Program and exhausting possible treatment options in the UK (The MND centres in London, Sheffield, Manchester, Oxford, Birmingham) with no success, we have decided to seek the specialised treatment Seckin needs in Germany, until it becomes available in the Uk to all SOD 1 MND patients — but it comes at a significant cost.

The total cost of the medical treatment, diagnostics and recovery support is £150,000 for the next 6 months. Every donation — large or small — brings us one step closer to making this life-saving treatment possible. We hope this will give Seckin the drug she needs until it becomes available to her in the UK.

We’re asking our friends, family, and the wider community to join us in giving Seckin a second chance. Together, we can turn hope into healing.

Our first fundraising event will be the Battersea Chasing the Moon 10k on November 26th where 3 of the team will run to raise awareness of Seckin’s condition and situation.

Why This Treatment

The hospital in Germany has the expertise and equipment that are not yet available to Seckin in the UK, due to our geographical location (Coventry and Warwickshire NHS Trust) and the capacity restrictions this seems to impose upon her.

The treatment plan includes:

• Comprehensive diagnostic testing and specialist-led care

• The Drug Tofersen and it’s administration via lumber puncture.

• Follow-up support and recovery monitoring

Every pound raised will go directly towards making this treatment possible and covering essential medical and recovery expenses.

How You Can Help

We’re asking friends, family, the local and community to come together and help us reach this goal.

You can support us by:

1. Donating whatever you can — every contribution truly makes a difference.

2. Sharing this page on social media and with your network.

3. Organising small fundraisers — every idea helps us move closer.

If 3,000 people give just £50, we’ll reach the goal that could save a life.

Thank you for being part of this journey. Your kindness truly makes a difference.