By now, most of you in the NA community will know that Glenn Irvine, husband of Ginger, father of NA patient Alex, and founder of the Advocacy for Neuroacanthocytosis Patients, died of cancer in March of this year, leaving those who loved him shocked by the terrible suddenness of his decline.

It is impossible to sum up in a few words how bereft Glenn’s death has left us. But we are extremely grateful and comforted by the avalanche of memories and reflections his friends sent to us in reply to the news.

There are so many, nearly 100, and we’d like to publish them here in full, ordered by surname -- some written as direct messages to Glenn, and some offered to his family as recollections of time spent together. Together these memories not only make a fitting tribute to Glenn, but also may help friends who knew him in just one of his roles to understand more about his wider life.

If you would like to add your memories of Glenn -- or if your comments were shared with us but somehow missed out from this list (apologies, it has been a hectic time for us here) -- please do add them in the comments below.

About Glenn Irvine

Born in Ohio, Glenn moved with his family in 1972 to London, where he initially worked in international banking, later joining an executive search firm which subsequently became Glenn Irvine International. He served as Elder at St. Columba’s Church in London and for 30 years was its Senior Study Group Leader.

Glenn’s other interests were many -- gardening, sailing, skiing, studying Greek in his retirement -- but his greatest legacy will be the work of the last 15 years in establishing with Ginger and others the Advocacy for Neuroacanthocytosis Patients. The Advocacy has broadened the knowledge of this ultra rare disease, offered grants for scientific research, and reached out to patients and families around the world. (Adrian Danek’s full tribute to Glenn, including the importance of his Advocacy work, is available online here https://www.rareconnect.org/en/community/neuroacanthocytosis/article/a-tribute-to-glenn-irvine)

Glenn is survived by his wife Ginger; two daughters Jennifer Nanton and Alexandra; two grandchildren Kobi Nanton and Ella Alexandra Nanton; and his brother John, John’s wife Becky and their daughter Heather in Ohio.

His family’s remembrances are many: doing science experiments in the kitchen, exploring every inch of Kensington gardens, watching Glenn’s bread and beer-making efforts; always generous with his time with multiple visits to the museums; gifting books and discussion about them; playing with the train he bought specially and adding appropriate pieces bought from an expert trader at Portobello market; and buying ice cream just before lunch. The encouragement to explore was Glenn’s mantra.

We remember him as a real gentle man, always with a smile and positive thought, patient and caring, not judging or classifying anyone, reaching out to those in need. A truly loving husband, father, grandfather, brother, uncle and friend.

His friends’ memories are below. Don’t forget to add yours if you’d like, at the bottom of this page.

I don't need to tell you what a wonderful man he was and how he made such a big impact on my life. I owe a major part of my career in chorea to Glenn. Without the Advocacy, the conferences you both organised, the subsequent articles, etc., I would never have developed my own knowledge and reputation in this area. Your contributions have put NA on the map for both the medical and patient communities. It has been a pleasure and honour to work with you, and your support for my own efforts has been tireless. With much love, appreciation, and respect, Ruth W

I remember when I first met him when I was thinking of joining John Grooms and being impressed with him then. My admiration for you both has continued to grow the more I have come to know you. I think that the Advocacy is amazing and is in a good place due to your tireless efforts and will continue its good work with the plans for the future we discussed at the last trustees meeting. We can all be grateful for for such a generous and productive life. I hope that this will give you comfort in the present time of sadness. Sheila P

We remember dear Glenn and the joyful memories we have of time spent together.
Alessandra L

Glenn was a lovely man, highly intelligent and both of you have incredibly brave, tenacious and caring in your battle to look after Alex and promote the NA Advocacy. Glenn was an AFSser in the true sense of the world, a man open to other cultures and to the world in general. By the way, did he ever get cross? I have only seen him with a smile on his face... Anne D

He had the warmest smile and was so easy to talk to. Nancy Mc

Glenn was a special person rich of energy and enthusiasm and also during the last meeting in Stresa he was as usual, very positive and participating and I have never heard him complain for anything. Valeria

Glenn was such a galvanizing force in the NA and he will be missed greatly. Karen and Mike

Glenn was so courteous and gentle, someone we all felt we could trust and turn to in trouble. He was wonderfully kind and also blessed with true modesty. He seemed quite unaware of the impact his sweetness had on those he met. I think he must have spent his whole life doing good. Veronica at Vernon Ellis

...we remember Glenn with great affection and respect - together you were a lovely couple.
Tennessee Williams wrote:" There is a land of the living and a land of the dead and the bridge is love." Judy and Bella

Glenn was an inspiration to so many of us, driving us to keep our eyes on our common goal. He was an inspiration to me personally and will be missed sorely. Susan H

Glenn was such a wonderful man. He was a true gentleman, an advocate, a warm face, a steady presence, a joyful person. I know your family will have a huge hole without him. Please know that I will keep your family in my prayers. Camille C

Glenn was such a presence.
A man so full of compassion and giving his "all" to important causes to him. He will be missed by many . I will miss him . Anne and Alain

Glenn will be greatly missed by many, not only family, but also the many friends he made along the way in the research community. But I´m sure everybody will remember him and his work, alongside you, to boost scientific research on ChAc and to start and create the Advocacy that so helpful is for patients and their families. Antonio

Glenn was a lovely man and a delight to know. I know his loss will be deeply felt by so many. Susan and Fred

Glenn was a kind and generous man who was devoted to his church and family. His untiring perseverance and dedication to NA will undoubtedly be missed. Penny and Tom

He was such a great guy, always positive and energetic in whatever he did. I am sure the NA community will surely miss his guiding hand. Pam and Jean Marc

Glenn's death leaves such a hole - so few had his grace, wisdom, and quiet manner. He was a true gentleman and the world is darker now. Susan and Kirt

Glenn was such a great guy, and Dad and all. I always enjoyed visiting with you on your trips to the states and even more so in London, having lunch and box wine and walks in that garden. Dinner that night in the pub, fish and chips. Mark S

Glenn was one of the finest, a wonderful person... a wonderful legacy! John S

Glenn will be hugely missed by so many people. .. as to my own thoughts and memories of Glenn, I must say that he was the kindest, most clever, cheerful, charitable and amusing man we knew. I don't recall ever hearing him have an unkind word about anyone. He was fun to talk with about lots of things, but he and I both seemed to be strangely burdened with clear memories of a vast number of songs from the 30's, 40's and 50's. It was always fun to somehow get onto the topic and discuss the lyrics of long forgotten songs. At some point, somewhere, we both agreed that one of the funniest verses of all was from "I'm Gonna Sit Right Down and Write Myself a Letter", and the line was: "kisses on the bottom, I'll be glad I got 'em...." Hazel S
While I am sure that I saw Glenn less often than many other of your good friends, I strangely felt as though I knew him extraordinary well, and I feel very lucky to have done so. He wasn't just kind, decent, helpful, thoughtful and many other good things; he struck me as that quiet type of leader who works out what any situation requires and then sets about acting on it for the benefit of all- a shining example of straightforward goodness. We will cherish our memories of him. Chris and Hazel S

My heartful condolence to you all. Glenn had been my old personal friend since my London days during 1974-1979. He worked hard in NA activity. Michael O

We know Glenn will be missed by all. There remains what he has built during his lifetime advocating for NA and providing a framework and much inspiration for all our advocacy efforts on NBIA as well. Natale Antonio of NBIA Italy

Glenn is truly a role model of how to generate strength and energy where it is needed. He was calm and had manners and yet can move people willingly forward to achieve his noble goal. It is hard to describe all the good things about him. Soohee L

Sad news indeed for many of us! We lost an incredible human and a true champion of the field of neuroacanthocytosis. I met and interacted with Glenn mainly via email for the past 5 years and then had the wonderful opportunity to meet him and his family personally this past October at Stressa. His encouragement and energy was contagious and stimulating. He will be sorely missed. Alicia R

He certainly will be missed by all who ever knew him. He was a special person in all that he took on to do in his life. Bob and Pat R

He was a wonderful man, a loving, selfless and kind soul. The world must seem like a lesser place without him..." Banu G

I feel grateful that I had the opportunity to get to know Glenn,
who really supported and motivated us scientists with his passion. It was his confidence thatscience will ultimately help all people suffering from Neuroacanthocythosis. Our scientific community will painfully miss him, but he will never be forgotten. We will try to continue and collaborate in his spirit. Mario M

He was truly a brave, kind and generous man. We have lost a trusted friend.
His love and constant care he provided his family will be sadly missed.
Ian and I send our love. We are sorry that we will not be able to make it to the service in the beautiful St. Columba's Church to which your family kindly introduced us as newcomers to London. Carol and Ian M

I met Glenn at the EURORDIS Summer School a few years back, and it was when we started talking about RareConnect. I found his passion and determination to help others really shined through. Robert P

I still have vivid memories of the Launceston Place days over thirty years ago. I clearly remember the positive mindset emanating from you and Glenn. It was giving a special aura to your household. Such dynamism was still there when you came to see us in Linkebeek in the late nineties. Fabienne and Sebastien R

We have such a good souvenir of our first time meeting in London, more than thirty years ago. Over those years we have enjoyed Glenn's positive attitude, friendship and enthusiasm for Alex's cause. His dedication and leadership will remain a living example for all of us. Didier and Nicole C

I will always remember the time Glenn saw us puffing away in the back garden and told us, 'you two are making a tobacco farmer in Kentucky very happy!' Alfian &Moo

We all are impressed what Glenn and you did and achieved for the field of neuroacanthocytosis. For families affected by the disease, for clinicians and researchers even though having to take care for Alex in the meantime. Glenn's non ending enthousiasms significantly helped to get science on ChAc moved where we are at the moment.

All of us not only were supported by the Advocacy but also got inspired to keep working on this rare disease by Glenn. By this we hopefully will help to continue his work in the future.
Andreas H and EMINA 2 &friends consortium

I remember Glenn with great fondness. He was kind to me, welcoming me into your home on my London visits and sharing his insights on British politics, the economy and higher education. It was always a highlight of my London trip to visit with your family and enjoy the luxury of getting caught up in person.

My most powerful memory of Glen is watching him help you care for Alex. The tenderness, the patience, the willingness to be present in the face of suffering and joy—all illuminated the depths of his character. Mary C

It has been one of my greatest privileges to have known the three of you -
you have taught me so much.

I can only add my few words to the many that you must have already received. Glenn was a remarkable man. There are very few great people but the ability to achieve so very much out of despair is remarkable and to do it with such humility, grace and strength is, frankly, unique. However I know that Glenn was only able to achieve all this because of the remarkable support and love he had from the family and indeed I am sure that he would have considered it
all a 'team effort'. I am absolutely sure that the amazing work will continue. I know that Glenn was proud of all that had been achieved for NA and, in my view, there is now an unstoppable momentum to the research workthat will surely give us clear answers soon. Most of all however,
I know howproud he was of Alex and her achievements and this must be a greatconsolation.
Dr Robin H

Although I didn't know Glenn as well as other members of my family, I remember him as being very kind and encouraging, as well as light-hearted and fun. He had such a heart for young people. What a good and faithful servant he was, who lived life to the full and achieved so much! Jean L (Roberts family)

He was such a gentle, quiet steady person...I miss him. Judith W

Glenn was such a kind and thoughtful man.. full of consideration for his family and others and a very warm personality. It was a great pleasure working with him in the old Wobaco days. Not only did he have great skills but also much consideration for the people he dealt with. Charles V-J
I remember him with your young daughters, both teaching Sunday School and discussing issues of meaning with them afterward. Alessandra L

Glenn was always so welcoming to the Chelsea Gardens Guild when we came to look at your garden and was so obviously proud of your achievements.
Heather M

I was remembering Glenn for Dan...remembering a Christmas lunch at our house, moments in your garden, tennis, hearing the sailing stories and seeing his enthusiasm for your girls. Paula H

I truly admired and loved his positive attitude, his imagination and motivation and his calm common sense were always present and made him the wonderful friend and companion he was. I will hold on to a sense of his quiet strength to call on when times get tough. Dick S

Glenn had such a deep impact on my life as a teenager. He had a natural gift for teaching-his approach to bible study always exploratory, always encouraging questions, always urging us to look deeper. His time that he dedicated to this had a lasting impression on me, and I'm sure on my brother James. Glenn was a great believer in integrity and holding strong principles. Victoria C

None of us who had the privilege of knowing him will forget his warmth, his humour, his honesty and his modesty, all lovable and admirable qualities! Mary A

Glenn was a generous, gracious man who used his personal and professional strengths for the benefit of many. He will be remembered by me both as a friend and for his dedication to finding a cure for NA. Louise D

We shall all miss him in St Columba's. He was the chief welcomer at the front door for my Sunday duty team and gave everyone a cheerful welcome with a lovely smile and ready help for those who needed it. Lilias G

I could sense Glenn was a very special man, always open to help and share.
Marion C

How wonderful Glenn was when years ago when I was in London; he was so helpful to a complete stranger and had such sage advice...he was so kind and generous with his time and wisdom. Diane M

Glenn was a very kind and self effacing gentleman, and most thoughtful, especially to
Richard when he wasn't well. We will all remember him with great affection and he was a charming and delightful neighbour, a smiling greeting being the default position on his face! Susan and Richard P

Glenn was such a lovely man, and he will be so very greatly missed. I have known him over all the years that I have been at St Columba's and held him in the highest esteem. I have many memories to treasure, and always remember Glenn with his welcome and smile in the vestibule when he was in duty. Helen M

Glenn was always such a cheery man when we met in Launceston Place and he will be missed by all. Connie and Peter M

I learnt early on what an extraordinarily congenial, generous and kindly person he was. I watched with great admiration his devotion and commitment in launching the initiative in bringing Alex's troubles to wider medical attention and support. We would not have hoped for a more friendly, intelligent and open-minded neighbour and will miss him a lot. Geoff C

Glenn will never be lost to us all as he was such a lovely, competent and jolly fellow.
He will be missed greatly! Glenn is such a shining example to us of thoroughness, eagerness, resourcefulness and many other 'nesses!. Glenn was an "inferno" of calm, with ideas for structuring ways of thinking of true pastoral care and nursing education of the mind and spirit. Graham and Sandra C

I will miss his cheery greetings, his warm good humour and above all his friendliness. Michael G

Denzil and I remember his many kindnesses, taking him to church and visiting him at St Wilfred's- a long standing friendship. Denzil and James D

I realise that I had known Glenn for nearly 50 years and he was always a model of wisdom, great humour, kindness and humanity. Daniel H

Glenn had a huge influence on me through the patience and thoughtfulness with which he ran our bible study class. He taught me how to think critically and to really explore the meaning of what we were reading. I particularly remember the time we spent studying the Book of Job. It is such a difficult text to get your head around but Glenn led us to form our own understanding through our discussion. James C

Glenn was a friend and colleague for over 40 years, always wise with his counsel and advice which I very much valued. Nigel H

Glenn was always so friendly and enthusiastic about everything, and he obviously loved the garden you both created- it must have given him so much pleasure.
Tony H and Geoffrey H

What a dear man we have lost. Glenn was person of fine and extraordinary balance. He was a person of great success, a "winner" in business, but he also succeeded in holding onto his essential gentleness of spirit. As a person of huge charm, he was attractive, he was fun, he was a person you wanted to spend time with, but he was unaware of that charm, remaining reassuringly himself- no side! As a person of great knowledge and understanding he wore this lightly, never a know all, rather one who shared and listened and enjoyed knowledge, a resource for everyone. He stood out as a whole, proper person who knew who he was and knew how to deal with others courteously and considerately. He had a very deep keel and made his own way. Clare and Bill A

Glenn was a very special man, for us scientists it is very good to learn what really matters and to realise why we are doing all the research. Oddy and research group NL

Glenn was a great ambassador for St Columba's as when on duty he always welcomed you with a warm smile and made you feel vey welcome. Glenn served the Service Unit for many many years and shall always be indebted to him for his great duty. Marjorie Mac and the Service Unit
St Columba's

Glenn was very good to me at Glenn Irvine International. He gave me a chance and provided endless support over the years. He was always so calm and considered and clever in his understanding of complex challenges. He also had a lot of energy and devoted time to work in trying to make it better. I shall not forget him as he was a big part of my life. Jayne M

Glenn remains one of my favorite people of all time. I remember how astounded he was when I didn't recognise the foliage of strawberry plants in your back garden. He demanded to know what they had been teaching us at Harvard! Sheila A

Glenn left such a legacy! So many people will feel a hole in their lives where Glenn has been. Charleen and Don R

For fifteen years Glenn had been a friend of many of us who are interested in the enigmatic condition of neuroacanthocytosis. With Ginger he founded the Advocacy
for Neuroacanthocytosis Patients because of their daughter Alex suffering from chorea-acanthocytosis. With an open-minded and global perspective Glenn helped shape all the international meetings as well as diffusing knowledge of NA syndromes, quickly sending conference proceedings to those interested. His presence was always vivid and he was at ease discussing science with the specialists. The Advocacy supported and supports a number of basic science studies on the ultra-rare diseases of NA. Glenn's enthusiasm for research in a spirit of collaboration should continue to guide us. Adrian Danek

Glenn was a good friend to me when I was wandering in the wilderness and I greatly valued his support. Gill has good memories of her time at Glenn Irvine Int'l. I remember particularly the holiday we had together on Sidewinder in Scotland and more recently when we joined you for a wonderful evening of music.
Gill and David D

We want you to know how much we liked and admired Glenn. He kept us safe in the face of danger on the open seas and earned our forever respect. Linda & Jim G

I look back to the time when Victoria and perhaps James were in the Senior Study Group and Glenn asked me if I could organise tickets for a theatre trip. This was to be the first of many occasions over the years when Glenn roped us in, get people together, encouraged the tentative and made the case for good fellowship. He seemed to be interested in everyone and genuinely inclusive. Our children loved his gentle chuckle and sometimes subversive approach to authority, and how about their sporting and musical exploits- and we as parents knew pure gold when we saw it. Glenn made everyone raise their game. Patricia C

Glenn's work with young people was widely admired, especially by our family. The world will be a lesser place without Glenn- he was a special irreplaceable person. Peter and Sarah M

Glenn was a fantastic man and he helped me a great deal as I explored my faith as a teenager- and ever since then he always greeted me with genuine warmth whenever we met. Alasdair S

We all have fond memories of Glenn: welcoming us as Elders, teaching Stephanie in the Senior Study group and introducing David to the joys of teaching that age group within the church; we will never forget his warm, friendly smile and his lovely charming manner. David Fiona Stephanie and Eilidh

It was such an honour to grow up Glenn as a neighbour, and I couldn't have wished for anyone better to make Launceston Place feel like home. He was always so kind and friendly to us.
Max S

Glenn and I were ordained together as Elders and it was so good to serve alongside him on "front door duty". Betsy W

Glenn was loved and respected by all at St Columba's because he was such a lovely person. He always had time for a word or two, always had a smile, always stood up for what was right and seemed to see the best in people. Our daughters Katy and Louise so enjoyed the Senior Study Group with Glenn. So many of our young, and now not so young people have cause to be grateful for the time and guidance Glenn gave them. Liz and Ken M

Glenn will be very much missed in the street, always ready with a cheerful smile and good advice. Dimity and Peter S

He always seemed like this worldly gentleman to me because of his accent (British to me, but American to the British) and he was always approachable and welcoming to everybody. He was positive and open minded and he liked to laugh heartedly and spend time with us children and have fun. Heather I

Everyone had such a regard for Glenn, he was always so interesting and good company. Nancye, Jimmy and family F in Australia

Glenn was a kind and good friend and I shall always value the time I knew and worked with him. John C

Glenn's endearing personality and kindness will be remembered by our family; we are grateful for the time he spent with us, making us feel welcome and part of the family at St Columba's. Suzanne Derek Sebastian Francesca and Natasha

I shall never forget the day I approached Glenn for the first time for assistance on what to do with some problem that was troubling me. He leaned back with that wonderful smile of his and his inimitable "oooh" puzzled that I was having any difficulty whatsoever. Go ahead, talk to anyone you want to; give it a go, there is no saying you cannot. I suddenly felt liberated and there was a different way to do things and for that I shall always be grateful to Glenn. I always felt Glenn approached his business life with great professionalism, coloured with a little of that Scottish Calvinistic common sense of course that led to his success. Alistair and Eila B

The time we spent with Glenn made clear his warmth, humor, intelligence and kindness. It was always a joy to be in his presence. Rita and Marty B

Glenn was such a wonderful and kind and supportive link between patients, their families, researchers, and practitioners alike. There was never an email he didn't respond to quickly, there was never a question he didn't try to answer or send you to the person with the right answer, he simply gave tirelessly of himself to seeking answers to these terrible diseases, and trying to allay the fears and meet the needs of patients and their families. He will be sorely missed. Joy W-W

Glenn’s warm, enthusiastic and vivid explanation of the origins and meaning of Thanksgiving will stay with me! Marianne A

Most admirable was Glenn's ability and willingness to muster all his organizational, financial and humanitarian talents to thrust forward as a take charge manager for NA activities. His talent for reading about NA, seeking out scientists, working in seemingly unrelated areas to get them interested about NA, and then recruiting them was extraordinary. I saw it at work in the questions he asked me and at the meetings we attended in Montreal and elsewhere. I will miss his valued friendship. Larry A

I will always have very fond memories of being with you both at Harvard reunions. A special highlight will be our trip to London; we especially enjoyed Thanksgiving dinner with you all.
Janet B

Glenn was the most influential person in my career. A true, believing, courageous mentor who helped me to expand my business life to the global theatre, when there was hardly an economy to speak of in Korea, which not many people outside knew about. In Suk O

Glenn's sincerity and inherent goodness were an example to me and he was a true and faithful friend. He contributed very substantially to the success of the business in those years.
Dolf K

Glenn- a dear friend who was an inspiration to all of us in his dedication to finding a cause and cure for NA. So many memories of so many good times through the years, none more special than your most recent visit to Maine with Alex. So glad we had that time together. Helen M

Glenn was amusing, sardonic, innovative, but above all things absolutely straight. That is no small compliment in the world of today’s business, and I greatly enjoyed our meetings. He seduced the conversation away from the normal flippancies whilst remaining light and amusing . Anthony R

Glenn was formative in a lot of my thinking in my teens and early twenties, first with the study groups and latterly with the chats, the coaching and the wonderful book recommendations.
Fergus C

Glenn seemed to be a man who naturally wanted to help people. His business reflects this as much as his work for the Advocacy. His warmth, geniality, dedication and thoughtful approach resonated in so much of what he did. Deirdre and Mark S

I have so many fond memories of Glenn when I was growing up. -after all you were like a second family to me. Glenn will be greatly missed by many people. Francoise R

*Glenn's opinions were often refreshingly original. Remember him for a big heart, generosity of spirit, completely self-effacing and ever positive point of view. Henry S

Glenn's presence will be solely missed at NA where his leadership and tenacity ensured that continuous process was made. Eva S

Glenn will be missed by us all. Our friendship goes back to the days when our girls were is Sunday School together. Anne W

It's over thirty years since I got to know Glenn, first as a motivational and thought-provoking leader of the Senior Study Group and after that as a really genuine and friendly person.
Andrew S

Glenn really dedicated so much to research and his legacy will be very important I am sure.
Marcy L-B

Glenn was such an amiable fellow- so kind, friendly and gentle. Jill F

I always enjoyed his company; he was so gentle and enthusiastic about all things. Anne C

I was a member of Senior Study Group at St Columba's some 30 years ago and stayed for an extra year because I enjoyed it so much. Mr Irvine was my favourite Sunday School teacher. I will
never forget him. Katie B

We are saddened by Glenn's going but will remember his humour, goodness and love for people and the world and dedication to doing good for others. Chowee and Robin

I will always remember Glenn as an extraordinarly warm, loving, good, patient, tolerant and industrious friend. Moritz and Olivia P

We remember with many others the days when Glenn was such a force fo good in St Columba's. His long years of service with the Senior Study Group was a stimulus to young minds to search for truth. Glenn was a reliable voice for common sense and his intelect and and expereince in life earned respect and he could be relied upon to present the other side to a discussion if he saw a purpose in it. We remember his sense of humour, kindness, willingness to pay a part in all activities no matter the demands on his life. Jill and Stuart S

He was such a lovely, kind and magnificent man, so grown up and yet with such youthful enthusiasm for all life. Noelle

I remember Glenn was such a warm and inviting person who always made us laugh as kids.
Kelly V