Monday, 22 November 2010

Sad news - a Tribute to Gunnar Stickler

It is with much sadness that I have to report the death of Gunnar B Stickler who passed away suddenly at his home in Wayzata Minneapolis USA on Thursday 4 November at the age of 85. I remember him for his compassion, energy and unassuming manner. The world has lost a great charismatic man who cared passionately for his patients, and cared deeply for people affected by Stickler Syndrome. Sadly I was unable to attend his memorial service but was asked to send out 70 copies of Ten Years On, the book I produced for the support group's 10th anniversary in 1999 and presented to Gunnar and his family. The first half of the book explains how and why I set up the Stickler Syndrome Support Group, and the second half contained a biographical sketch of Gunnar. I sent the following message to be read out at the service: 'I am so sorry I cannot be with you today, but the journey was simply not possible. I feel extremely wretched about this, but knowing Gunnar, I am sure he would have understood. When I was diagnosed with Stickler Syndrome in 1988 I found very little information in the UK about it, so I wrote to the Mayo Clinic, where it was defined, for information, and of my intention to set up a support group. Gunnar responded to my letter and enclosed copies of his 1965 and 1967 papers and put me in touch with several American families. This was SO typical of Gunnar, and so began a warm correspondence. His interest in every aspect of life shone through every communication. We discussed many subjects ranging from the atrocities of war, to his love of sport, especially iceboating, to his concerns of being an over protective grandfather. I eventually set up the support group in 1989 for families with Stickler Syndrome, the first of its kind, and when I mentioned my intention to hold a 'Stickler' conference in the UK, his immediate response was so humble, and he promised to be there at my side to support me. True to his word, he came over to our first conference in November 1994. and I will never forget the pleasure of meeting him for the first time, his great compassion, his unassuming manner, and our members can still recall his gentleness. His love and empathy for sick children was obvious that weekend as he made a point of talking to them all, as well as their families. Again when I wrote the book 'Stickler the Elusive Syndrome' I sent him the manuscript to read and asked him to write a preface. In it he wrote: 'While looking on to the flooded Mississippi from my study I think of man's continued effort to make order out of chaos. I reflect on the remarkable book Wendy Hughes has written. She describes very well the hereditary disease which we at the Mayo Clinic named... It is society's gain that Wendy's condition was diagnosed and defined. Some order replace chaos.' Gunnar was extremely interested and supportive of all my writing and was always keen to receive copies of anything I published. He came over gain to our 10th anniversary conference in 1999 and when I presented him with a copy of Ten Years On he could not believe it, and kept saying 'For me? Usually nothing is written about a medical person until they are dead!' the joy on his face that day was an image I shall always remember, and I am so please I wrote that book. He kept rubbing my shoulder in disbelief saying he did not deserve this fuss. The world was lost a great, unassuming man. His family have lost a loving husband, father and grandfather, but through The Stickler Syndrome Support Group and other groups around the world his legacy of defining the condition will live on. he will always have a special affectionate place in my heart, and I feel extremely privileged and honoured to have known and met him.

Gunnar and me, cutting our 10th anniversary cake.

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