Having received permission from Frederik Suter’s parents to write a tribute in his honour, it is with the greatest sadness that I inform our NF2 community that he has passed away. Fred’s NF2 was brutal yet he remained kind, compassionate and loving to the very end instead of allowing the condition to turn him bitter. Surely, this is life’s greatest triumph over adversity.

Fred spent his final days in the comfort of his own home, surrounded by loved ones and flowers, and not once complained about the unfairness of life or death. Thanks to the assistance of empathetic professionals and morphine, he was free of pain and his parents held him as he took his final breath. They described it as ‘the circle of life’ and have chosen to adopt Fred’s most favourite quote from Mahatma Gandhi, “Don’t cry because it’s over, smile because it happened”.

I had the privilege of knowing Fred since 2011 and I learned so much from him and his unique spirit. He taught me how valuable it was to have humour in the face of hardships, or as he called them “shituations”, and in the words of Oscar Wilde he used to say to me whenever it was needed, that “life is too important to be taken seriously”. Fred studied language and linguistics at university, choosing to make no excuses about being fully Deaf or his many other challenges; always finding a way around them. When we first met, he allowed me to read his personal “bible” in which he collected quotes, sayings, random ponderings etc and called it his religion. This inspired me to start one of my own and I always turn to it in times of need to reaffirm my beliefs. It has become so valuable to me that it would be the one item I would save if my house caught on fire and it’s with thanks to Fred that I have my own religion.

It is not an overstatement to say that Fred fundamentally changed my life and in doing so, we ‘gave birth’ (as Fred put it) to an NF2 community here in the UK. It was through listening to Fred speak about the German NF2 community and the invaluable impact it had on its members that inspired me to create one in the UK. But before all of this, I remember having an idea about producing a book of stories written by NF2ers around the world and presenting it to Fred on a scrap of paper, seeking his approval, while we were enjoying a sunny day out in the New Forest. As he read what I had jotted down, his smile built up into the biggest grin I ever saw and with eyes as wide as they could open, he looked at me and said “LET’S DO IT!!”. This book, ‘NF2: Our Journeys’, was the catalyst for creating the community group ‘Can You Hear Us?’ (CYHU), which went on to provide immeasurable support for people living with NF2.

Fred flew from his hometown in Germany to attend the book launch of ‘NF2: Our Journeys’ and at the event gave a presentation about the German NF2 community called, “The German Spirit”. He continued to support me with CYHU and played a fundamental role in organising our first few social gatherings, which he took no credit for due to a personal preference to make a difference to the world anonymously. As the leader of CYHU, many people relied on me to provide support and this took a toll on me sometimes while I was battling NF2 myself. Fred noticed this and also that I felt underappreciated, so in an attempt to keep me going, he bought a blank scrapbook and secretly passed it around to everyone at one of our weekend gatherings for them to write about how much they valued me and the NF2 community I had created for them. Fred presented it to me in front of everyone on the last day of the gathering and I bawled my eyes out. This was typical Fred; making a difference to individuals and the world through random kindness without expecting any limelight in return. This is the most valuable lesson I learnt from him and the message I wish to put out into the world in his honour.

Rest in Power, thy greatest warrior, Sir Frederik Suter.