I knew Mary from when we worked together at Sense. She was an amazing character, she single handedly made Sense take Usher seriously and kept it on the agenda at a time when it would have been far easier just to concentrate on congenital deaf blindness. She was tireless and completely right of course. Personally, she taught me a great deal, she was one of those people who would always take the time to explain something or share her thinking. A very sad loss indeed

I had the enormous pleasure of working with Mary on some projects.Her professionalism, beliefs in the rights of all children and young people and passion for her work shone through. I am saddended to hear of her passing and my thoughts are with her family who are I am sure very proud of Mary's work.

Most of my involvement with people with Usher Syndrome has been in the years since Mary "retired", if that is the right word. But Mary's passion and influence, and the esteem with which she was held, are still very evident. She made it impossible for us to forget Usher. She communicated her commitment to so many, and it is a mark of Mary's achievements that the work she started will continue in to the future. She will be sadly missed. My thoughts are with her family, friends and colleagues.

I knew Mary from my earliest days at Sense under the arches of what is now a very posh St Pancras Station. We shared many a laugh together about life under the platforms! Following on from Joff's comment, I too remember with great fondness, those creative arts weekends in the west country. Mary had a vision for supporting people with Usher to access all sorts of creative pursuits and she pursued it with vigour. We had some great weekends but luckily for me, my attempts at pottery didn't survive the office moves away from the arches! I learned so much from Mary and my thoughts are with her family at this sad time.

Mary's fight for people with Usher to be recognised by Sense and by other organisations has truly borne fruit. Her influence on the Usher Team at Sense was to kindle in us her passion for the needs and rights of Usher people of all ages. Mary's contribution to Usher work in the educational, social, leisure and medical fields is enormous. She has left a solid foundation for future Usher work of all kinds.

Russell - I know Mary over 25 years ago when she set up meeting for Usher people in London and I learned more information about Usher Syndrome as know RP. Her development with Usher people very rapidly in years on. I do remember that Mary organised one week canal holiday for Usher people in early 1988 as it was so wonderful time as she do loved nature and history. I know she was very true Christian and do caring about Usher or deafblind people. She was encouraged me to created my infamous cartoon 'Fred the Usher as she asked Sense to organised new Christmas cards. Her projects was so vital to study with Usher Syndrome and awareness. I do enjoyed to meet and chat with Mary as she do always smiling!
Anne - I do remembered Mary when we met during Usher weekend away or meetings in early 1990's as she was so wonderful and caring person to encourage Usher people to be positive.
Thank you Mary as we will be never forget her in our life.

I have just learned about that terrible news!
Mary Guest always was so interested in our progress in Russia in supporting Usher people. Thanks to Mary we founded our charity, got several joint projects with Sense International. Usher people from Russia visited UK and could talk to Mary themselves. Mary stayed at my home... My Mom and I fell sorry about Mary.
God help you to overcome that loss.

Mary initially helped my wife and I to understand practically where assistance was available in supporting the needs of our son who has Usher 2. We got to know Mary and her husband socially and it was always a joy to meet them. We will miss her.

Since first meeting Mary in the 1980s, when our son was in his late teens, she has been my mentor and inspiration. She got me to join the Usher Syndrome Advisory Panel at Sense, and Nick was involved with the formation of the Young Usher Group (through her advocacy. He was also involved with Sarah Reed in the project Mary set up to bring awareness of Usher to the deaf community - most of whom at that time did not understand the problems Usher people faced. Often Usher people were ostracised by the deaf community because they did not always see or understand sign language directed at them. In the 1980s the only places deaf people met each other was in Deaf Clubs as there were no computers then. For Usher people going to the Deaf Club, it was hard when the members there often ignored them because of the difficulty of communication (sometimes due to poor lighting or being unaware of the person next to them), and even more isolating for them. Mary fought hard to bring a wider understanding of Usher to everyone all over the world. She also worked hard on the medical world at such places as Moorfields Eye Hospital, where little was known about the problems of Usher at that time. The progress we have today for all Usher people is almost solely down to her efforts in the early years. She will be sorely missed.

Mary will remain in my memory forever as a person who with great determination patched "the hole of lack of knowledge” on Usher syndrome itself; rehabilitation issues, etc. - all over the world, both among professionals, parents of children/ young persons with Usher syndrome, as well as among deafblind people themselves. One felt that she did it with great passion! She infected me with it!!! She also broke her enthusiasm in my collegues, among them dr Hanna Siedlecka. Thanks to that we prepared first articles, leaflets about US, and the first study of people with US (hold - in collaboration with TPG - and developed in a book by dr. Siedlecka, otolaryngologist.) Mary was without a doubt - indirectly - one of the main initiators of efforts to popularize the issues connected with US in Poland !
I learn so much from her / thanks to her, especially at a time when there was no access to the internet; at that time she was (for me) a basic source of knowledge about US. And even when the internet came along – she gave the opportunity to update the knowledge of the US, rehabilitation, treatment - through conferences, pre-conferences (like this one in Perth), and “fight” for the early detection of Usher Syndrome. I met her first in 1993 at IEDB ( DBI) conference in Potsdam. We had a pleasure to host her few times in POLAND; in 2008 we (together with dr Siedlecka) ran with Mary (and Marylin Kilsby) Usher Syndrome Workshop in PL, attended by representatives of several countries in Central and Eastern Europe.
Mary was a beliver. She passed away in the Easter Tritium – on Holy Thursday. She spent the holidays in the place where so often roamed her thoughts.
Goodbye my dear friend, Mary and - rest in peace. See You in the future! You will stay with me forever! THANK YOU FOR EVERYTHING !
Małgorzata Książek, TPG – Towarzystwo Pomocy Głuchoniewidomym
(Association for Support for the Deafblind), Warsaw, POLAND
See also the link: www.tpg.org.pl

When I joined Sense, I knew nothing of Usher, that was until I met Mary. Mary not only ensured my education! but inspired me to learn more and I now have the priviledge and pleasure of working daily with the Sense Usher Team. Mary's unstinting work and passion regarding all things Usher will be her enduring legacy. Thank you Mary

When I was diagnosed with Usher - it was Mary who guided me to become the person I am today. When the USAP was set up I was invited to attend and I spent many years on the panel with Mary. She inspired me to do what I am doing today and to give me that self belief in overcoming my Usher. She was a truly remarkable person and I will miss her greatly.

I haven't met Mary Guest, but I have heard that she has done so much for Usher people. My thoughts are with her family, friends and colleagues.

In our last email exchange Mary described me and my wife, Christine, us as one of her 'early ones' as we met her in the late Seventies at the annual BRPS event. It came across immediately that she was a very eager and passionate person always encouraging to be practical. I realised from Mary that I have Usher Syndrome and not just being deaf as an addition to RP. No wonder soon after she moved over to Sense in 1983 she got me involved in volunteering for Sense which I've been doing ever since. She got me to feature in the first production film on Usher Syndrome which was later televised as she wanted the nation to be aware of Usher Syndrome. My engagement with Mary on Usher issues and activities went on ever since. Anything I ask about the effects of Usher Syndrome she always has the answer as her amassed knowledge was so deep. Mary would even take a challenge such as to expand the services to meet the needs of adult Ushers in everyday life on top of the education and awareness programme and she did just that. Mary was always keen to empower Ushers such that groups were started such as the young Ushers group, the Usher link group amongst others such as the US Families, Usher Advisory Panel, etc. Mary was very passionate in the research and medical field to get research and medical programmes started with the objective to find the ultimate cure or at least address the progressive loss of vision through RP. She was on the case concerning Ushers right to the end, she never really 'retired'. Mary, you will forever be remembered as the pioneer for all the work and progress concerning Ushers which has thrived to this day, we will ever be so grateful, we cannot thank you enough. Your MBE which you were so proud to receive was very richly deserved and even then you deserve an even bigger medal which you will truly get.

Mary influenced and taught us all with a mixture of passion and drive that was quite exceptional. She shared her vast knowledge with humility and yet managed to make us all realise that her message was one of great importance. She has touched so many lives, has influenced so much work and was loved and respected by a vast army of us and yet I think she would be quite embarassed by the acolades coming her way!
I went to visit her a couple of weeks ago, despite being tired and poorly she still wanted to know what was going on in the work we had shared. I am one of the many many people who will remember her with great fondness and deep respect. Thank you Mary for making me sit up and listen, making me challenge and letting me know that anything less than 100%..is just not quite good enough! We will miss you.

Thanks you Mary for your enthusiasm and your trust in everyone capacities. Thank you for all you taught me each time we met during conferences and for your kindness. You will stay in my memory for ever. All my warm thoughts to your family and to your colleagues.

I first met Mary in the late1980s, a few years before I joined Sense. I was working in a school for Deaf children with additional disabilities in Bucks and it was thought that one child may have Usher. Mary was very helpful and true to form, she then remembered having been in contact with me when I visited Sense 'under the arches' at St Pancras as part of my induction into a new role working in Kent for RNID. We chatted for ages about Usher and I went home armed with all the latest info. Fast forward 3 years to 1994 and Mary was part of the interview panel for the post of Development Officer, Acquired Deafblindness, Sense. I got the job, and we worked alongside each other from then on.
I have so many memories of her. Her passion, committment and achievements have been commented on already, so I want to share my memories of her sense of humour, love of scarves (a vast, bewildering collection!) inability to throw anything away - just in case and her wonderful support when my own hearing began to decline. I learnt so much from her over the years, not only about Usher, but about gardening and cooking (we shared a passion for both) and even running weekend events!
I have had the priviledge of managing the services that Mary developed for the last 10 years or so, and it has been a real priviledge. Mary laid down a wonderful legacy that has reached far and wide and has influenced so many of us. I will greatly miss her.

I have known Mary since November 1983 from day 1 when I started work at Sense in Grays Inn Road when it was a small 'family of seven staff' inclusinfg Rodney Clark then CEO, and Paul Ennals, in the London office. Mary set up the Usher Syndrome, supported people with Usher and RP, and their families. She was a great asset to Sense in the numrous work she did. I could say a lot more, but too many to mention so it is brief. We and her family, were very proud she was awarded the MBE in 2010 in recogised of the work she did. She is very greatly missed by everyone who knew her, but her work contiunes. Nary will be remembered for ever. My thoughts and prayers are with Ben, James and family.

Mary had inspired me in such a way as to create and develop HSI UK which comprises mainly Usher Type 2 and 3 and it is to her that I have the strength to continue as long as I’m able to with such a distressing condition. I remember the arts and Usher awareness events in Wales combining movement, music and drama which were truly unique in such wonderful surroundings and thank her for tremendous support whilst recovering from mental breakdown to enable me to live in hope. God Bless you Mary

While working in the fundraising department (it was then 3 people!) of Sense, Mary and I organised a week on a canal boat for a group of young people with Usher Syndrome (which Russell refers to above). Personally, I haven't laughed or been so terrified since! Mary was convinced that walking along the canal path in the dark from the pub, steering the canal boat and cooking on the smallest hob I've seen - were all perfectly possible... and she was right!

We've lost a true professional with a warm heart!

I first met Mary in the early 70s after receiving a letter from Ben Berman, the founder of the American Foundation for RP sufferers. He suggested that Mary and I should get together and start a charity for sufferers of retinitis pigmentosa - which we did with Mary being a founder trustee. It was through Mary's hard work and determination that the charity known now as RP Fighting Blindness was founded. Mary held many different roles in the charity; she edited a newsletter for us; she headed the welfare committees; represented us at international conferences and, of course, focussed her energy on her very special cause which was Usher's syndrome. She promoted research and contacted sufferers and their families. She selflessly gave up so much of her time. Her many papers and lectures on Ushers are known worldwide.

I personally a lost long standing friend which I will sadly miss.

Mary Guest, MBE has been a champion of Deafblind people, particularly those with Usher syndrome. Her compassion led her to set up services for people with Usher both nationally and internationally, where there were none before. She also strongly supported genetic research into this condition. Mary gave unfailing support to people with Usher and their families and will be greatly missed by them as well as her work colleagues and friends.

I first met Mary when I visited Usher Team in Sense back to 2004. When I found out myself being Usher in 2002, I tried to look for useful information about Usher Syndrome on Internet. And I knew about Usher Team in Sense and Usher UK which let me go to England for studies for a year in 2003/4. Thanks to the wonderful information papers given by Usher Team, I was positive to know about how to live with Usher Syndrome. I haven't seen better information than what she had made and left us. And these useful information papers later brought me several chances to meet many Ushers from Britain which were all new to me. I'm sure that the seeds she put in not only all the UK but also the world are growing and I really hope that Usher Team in Sense stays for Mary and us. You'll be with us all the time. Thank you so much, Mary.

I worked with Mary on and off over quite a few years. We first met in 1988 when I arrived at the rather dark and damp offices of Sense, under the arches of St Pancreas Station in London.This was my first day as her assistant on the Usher Syndrome Project. As we had what would be the first of many chats over a cup of coffee, Mary spoke about the history of the project and her hopes and aspirations for future work. Her enthusiasm, passion and committment were not only evident, but also incredibly infectious.
I have many fond memories of Mary, amongst them being; the creative arts weekends in Wales; learning about her faith, her family and beekeeeping as we sat in a 3 hour traffic jam on the M6; and manically producing party food for 50 people with Usher and their families (when the caterers didnt turn up for a Christmas party!).
The last time that I worked with Mary was on the National Collaborative Usher Study. After many years her passion had not diminished. Many of the young people with who she had worked when they were first diagnosed with Usher syndrome were now adults with jobs and careers, partners and families. Mary was very proud that many of these young people - her Usher family - were striving to meet their full potential in the present; but she also remained mindful of the immense impact that Usher syndrome can have on families and the huge future potential of genetic reserach. Through Sense, Mary initiated and facilitated a research programme that has hopefully laid the groundwork for positive medical and scientific change to come.
Mary made a difference. Let us strive to carry her legacy forward.

Mary was a core member of the small family group of staff in the early 80s in Grays Inn Road, and then udner the arches of St Pancras Station. She was a fierce advocate of the needs of people with Usher, at a time when most of sense's work was with congenitally deafblind people, and Sense's successes with Usher are attributable more to mary's pasison and energy than anything else. It was wonderful also to see the way in which she could inspire people across the world; her drive to share her knowledge with others and the infectious nature of her enthusiasm mean that the results of her work have spread across many countries. It can not be said of many people that their works continue beyond their time, but it certainly is true of Mary - the impact of her work will be evident for a very long time.

I first met Mary Guest at Roughmoor Centre in Swindon for Usher activity weekend in 1987 after Nick Sturley introduced me to SENSE. I was nervous and not sure as I saw various Usher including Michael Corney (I never saw hands on before). Mary explained all about Ushers and taught me how to use blind manually before I could communicate and Michael taught more hand ons and corrected my incorrect hand ons and she made sure I enjoyed myself. This weekend was so much fun and enjoyable and Mary was a wonderful person I have met. I saw her often in many weekends and meetings over the years including she invited me to start the Young Usher Group with few of Ushers to set up and she made me more confidence and she changed my life from unhappiness to more confident and happy life. My life would be never better if I haven't met her. She is only person that I can share my problems and her great help and she is sorely missed by me. I will never forget about her for ever. Thank Mary for making me happiness life. Sarah

When I found out being Usher in 1987/88, my mother visited Sense and met Mary Guest. She shared the experience of Ushers out with my mother. Mary encouraged me to be involved with the Usher activities such as the Usher weekend. Then I was involved with the Sense as volunteer for the part of the research projects and fund-raising, etc. I appreciated Mary to achieve all her work/projects for the Usher people.

What a privilege it was, to know and work with such a lovely person. Her tenacity, professionalism and dedication inspired those who knew her.

My sincere belated condolences for the loss of Mary Guest. I got to know Mary when we travelled together to Ahmedabad India in 2000 to attend DbI meetings and the First Asian Deafblind Conference. Subsequently I worked with her when I helped organize her Usher Workshop prior to the 2003 DbI World Conference in Mississauga, Ontario. She was always so gracious and did so much to promote the cause of Usher Syndrome in the UK and throughout the world.

we are very sad to hear that Mary has passed away. Deafblind Organisation of Ivory coast present his sincere condoleance to her family and deafblind International.