Hello everyone,

It has been 12 months and 10 days since our battle for access to Tofersen began. It has been a long and eventful journey, during which we have learned a great deal about the MND care system—where, sadly, there is still so much work to be done, and my condition has progressed unabated.

I worked very closely with the MNDA to raise awareness of the unfairness surrounding access to the Tofersen treatment across the country. However, I have come to realise that creating change or getting decision-makers to act on something so urgent, is painfully slow and often dismissive.

After finding out that I have the SOD1 gene mutation, I wrote to leading professors and medical teams to ask if I could be included in their Tofersen early access program within their MND care units. Unfortunately, I was turned away by all of them because I was not within their catchment areas.

My consultant then tried to have me referred to the University Hospital Birmingham (UHB), as they were being trained and preparing to start the treatment. My referral was made in March 2025. After a long wait, we ultimately discovered on 10 October 2025, entirely unexpectedly that I had never actually been placed on their waiting list.

This was devastating news for me and my family. It meant that precious time had been lost waiting for something that had never existed in the first place.

At that point, we had no choice but to explore other options. This meant looking for treatment abroad and relocating—both incredibly difficult decisions—but there was simply no alternative.

We therefore began researching clinics in Germany, as we knew that Tofersen had been approved for use there, although accessing this treatment would come at an incredibly high financial cost for us. This was particularly difficult given that Tofersen—an intrathecal injection that must be administered monthly for life—is provided free of charge to the NHS in the UK. Nevertheless, we began communicating with RKU – Universitäts- und Rehabilitationskliniken in Ulm, Germany.

The cost of the first injection was €22,918.50, and each subsequent injection costs €26,084.85. We new that I would require three injections in the first month, followed by injections every four weeks, but decided to start the process in the hope that I may eventually secure treatment in the UK.

As many of you know, my first treatment took place on 9 December 2025. Rich and I drove to Ulm and stayed for four nights to make sure I was well enough to travel back to the UK. We now need to return for the second treatment on the 23rd of December.

None of this would have been possible without your support. We are so incredibly grateful for your kindness and generosity. Not only with your donations but going the extra mile to organise a number of fundraising events—and putting so much effort into completing them—this means more to us than words can ever express.

Here’s what has been organised and achieved so far this year by my family and friends to help raise funds for our cause:

Events completed in 2025:

• An online flower bouquet raffle

• Cycling in India (Some 450km from Goa to Hampi)

• A mulled wine and mince pie evening at the lovely Griffin House, Rugby School

• The Battersea 10 km run

• The Milton Keynes Half Marathon

• The Singapore marathon

• And the ongoing run to and in Germany challenge.

Events coming up in 2026:

• Sponsored 10-mile walks in both Dunchurch and Sheffield, organised by the wonderful ex-Lawrence Sheriff School maths department

• A Sports Dinner Evening at Newbold Rugby Club

So far, we have raised nearly £31,000, which is truly unbelievable. The big question, however, has always been the sustainability of such a venture, with 6 months of injections costing in the region of £ 150,000, and what role the NHS in the UK will ultimately play.

Therefore, as I mentioned before, I have now relocated to Tooting, London, where the incredible St George’s Hospital is based. I have registered with a local GP and am now receiving my MND care at the MND Unit at St. George’s

After the convoluted, ambiguous and ill-informed responses I received from my previous NHS Trusts in the Midlands, the support, communication, and guidance I have received from St George’s has been beyond my wildest expectations. For the first time, my emails and queries are answered promptly, and I feel that people were genuinely on my side, actively trying to find a solution to my situation rather than defaulting to discussions about a lack of resources, funding, or delays due to bureaucracy.

The greatest news of all has just come through, with St George’s Hospital agreeing to take me on and continue my treatment after my first two loading injections in Germany, and agreeing to start my treatment on the 8th January. After so long and such a battle this was beyond my dreams, and I honestly didn’t know what to say. Even saying this out loud feels scary, as if it might suddenly take an unexpected turn and bring me back to square one.

But I wanted to share this news with you—because, as I’ve said before, none of this would have been possible without your support. I feel that I now have a chance—one that was denied to me for over a year—and with it, the hope and possibility of slowing down, or even stopping, the progression of this illness. One thing I have learned is that with MND, you never know how long the journey will be, or where it will take you.

Once again thank you, from the bottom of our hearts, for standing with us on this journey, please keep watching Facebook, Instagram and JustGiving for updates as we have obviously amended our totals with this new development in mind.

Love Seckin.