Seckin McGuirk, a devoted mother and wife, is bravely facing the harsh realities of Motor Neurone Disease (MND), a rare and debilitating condition that gradually robs her of her ability to move and function independently. However, there is hope in the form of Tofersen, a life-saving drug shown to slow, and in some cases, halt the progression of MND. Unfortunately, despite its proven effectiveness, access to this crucial medication is limited, with the NHS only providing it to a select few patients. The high cost of administering Tofersen—ranging between £15,000 and £30,000 per patient per year—coupled with the specialised equipment required, has led to hospitals in Seckin’s area refusing to offer it.
MND is caused by a mutation in one of several genes, with Seckin’s being the SOD1 gene. The SOD1 gene plays a crucial role in helping the body break down toxic by-products that can damage cells. In Seckin’s case, the mutation causes this protein to clump together within motor neurons, leading to their deterioration and loss of function.
Seckin vividly recalls the moment her life began to change. While out for a run one day, she felt something unusual in her hip. What followed was a rapid decline in her ability to move, and she soon found herself wheelchair-bound, struggling with basic functions, including the use of her hands. Now, Seckin has taken on a new role as an advocate, joining forces with the Motor Neurone Disease Association (MNDA) to fight for the widespread availability of Tofersen.
Recently, the MNDA took their fight to Parliament, calling for Tofersen to be made available to all NHS patients who could benefit from it. To make their message even more powerful, they brought along a life-sized ice sculpture of Seckin in her wheelchair, which served as a chilling reminder of the brutal realities of living with MND.
The sculpture, standing over a metre tall, was a monumental effort. It took more than a week of meticulous planning, sketching, and sculpting to bring Seckin’s likeness to life in ice. Csaba Voss, Head of Creative at Icebox, shared his thoughts on the project, stating, “It’s been a huge project to be involved with, and one which I hope will have a big impact.”
As Seckin and her fellow advocates stood outside Parliament, fighting for access to Tofersen, the sculpture slowly began to melt, serving as a visual reminder of the time running out for MND patients. Every drop of water that fell was heartbreaking reminder of the precious moments ticking away for Seckin and others suffering from this devastating disease.
Seckin McGuirk, a devoted mother and wife, is bravely facing the harsh realities of Motor Neurone Disease (MND), a rare and debilitating condition that gradually robs her of her ability to move and function independently. However, there is hope in the form of Tofersen, a life-saving drug shown to slow, and in some cases, halt the progression of MND. Unfortunately, despite its proven effectiveness, access to this crucial medication is limited, with the NHS only providing it to a select few patients. The high cost of administering Tofersen—ranging between £15,000 and £30,000 per patient per year—coupled with the specialised equipment required, has led to hospitals in Seckin’s area refusing to offer it.
MND is caused by a mutation in one of several genes, with Seckin’s being the SOD1 gene. The SOD1 gene plays a crucial role in helping the body break down toxic by-products that can damage cells. In Seckin’s case, the mutation causes this protein to clump together within motor neurons, leading to their deterioration and loss of function.
Seckin vividly recalls the moment her life began to change. While out for a run one day, she felt something unusual in her hip. What followed was a rapid decline in her ability to move, and she soon found herself wheelchair-bound, struggling with basic functions, including the use of her hands. Now, Seckin has taken on a new role as an advocate, joining forces with the Motor Neurone Disease Association (MNDA) to fight for the widespread availability of Tofersen.
Recently, the MNDA took their fight to Parliament, calling for Tofersen to be made available to all NHS patients who could benefit from it. To make their message even more powerful, they brought along a life-sized ice sculpture of Seckin in her wheelchair, which served as a chilling reminder of the brutal realities of living with MND.
The sculpture, standing over a metre tall, was a monumental effort. It took more than a week of meticulous planning, sketching, and sculpting to bring Seckin’s likeness to life in ice. Csaba Voss, Head of Creative at Icebox, shared his thoughts on the project, stating, “It’s been a huge project to be involved with, and one which I hope will have a big impact.”
As Seckin and her fellow advocates stood outside Parliament, fighting for access to Tofersen, the sculpture slowly began to melt, serving as a visual reminder of the time running out for MND patients. Every drop of water that fell was heartbreaking reminder of the precious moments ticking away for Seckin and others suffering from this devastating disease.