ANNE MAWDSLEY, MBE 1942 – 2014

After working with such an incredible individual we are shocked and deeply saddened by the news of Anne’s passing, even with the wonderful comments and tributes to Anne, some of which are shown below, they are but a small measure and only touch on her true achievements - given so selflessly and tirelessly for the last 32 years. We are forever in your debt, Anne, for creating an inspirational charity dedicated to those with Raynaud’s and scleroderma and we will continue to provide the service to each and every person we connect with, in your honour. You will always be with us Anne, leading the way. May you rest in peace.

Below are a few words from colleagues, friends and supporters of Anne that we'd like to share with you. (Move your mouse over the kind messages to pause the slideshow)

  • So sorry to learn of Anne's passing, a wonderful lady,, and we all admire the Charity Anne built from scratch , a wonderful legacy of her drive, determination , and of course daring, in those wonderful annual fundraising events she undertook, at great personal risk.
    Anne recruited many professionals for research as well as being available herself on telephone to listen, and to help fellow sufferers .
    In the early days of the charity I encountered Health Service Staff who'd not heard of Scleroderma, but Anne changed that.
    Anne made a wonderful contribution, will be long remembered, loved, and admired, and leaves a really proud legacy.

    Ron Peart.
  • She was an inspirational lady and so sad to hear the news.

    Veronica Huque
  • Finding the Association has helped me feel secure with 'my' scleroderma. Anne Mawdsley and her team provided me with many answers, much information and tremendous reassurance along the way. I thank you for the photo, for it reflects how she seemed to me attentive, open to the joy of life, embracing the task in hand. So strong.  So radiant. So ..busy! An inspiration, yes. A blessing, Yes, missed she will be , even by people who like me only knew her from the Newsletter and a few chats on the phone, her passing will be significant in our lives as Raynaud’s and Scleroderma sufferers. I thank God for her, and I pray that each of you who have been closely linked to her will be strengthened and comforted, to continue on your paths..... With my sympathy and best wishes.  

    Irene Thurnell
  • Thank you for all you have achieved forming this lifeline for us all. Forever in loving memory. From Hilary Collins and her Daughters, her Uncle and first cousin who are sufferers.  We can't thank you enough. God Bless you Anne. Rest in Peace.

    Hilary Collins
  • What very sad news.  I never had the pleasure of meeting Anne but felt supported and inspired by her great courage.  My condolences to her family and all who knew her and worked with her.

    Coral (Burrows)
  • "Anne was a truly inspirational lady. I never met Anne, but over the years have spoken to her a few times on the phone and also through email.  My mum died of raynauds and scleroderma in 1994.  When she was first diagnosed I know Anne was a great help to my mum and dad in the early days.  I was too young to remember, but my dad told me how much help she was and always spoke very fondly of her.  Much so that my dad was still involved with the charity and always attended the conference's each year until he died in 2010. Can you please pass on my condolences to Anne's family.  She will be fondly missed by many, but in years to come her legacy will live on with what she has left behind, a truly remarkable lady."

    Simon Blackburn
  • Thank you so much for letting us know about this service.  I will certainly try to come to it on behalf of the UK children with scleroderma that we have worked with thanks to Anne’s support and focus.  She was a truly remarkable person who gave of herself so tirelessly.  I am honoured to have known her.

    Dr Eileen BaildamConsultant Paediatric Rheumatologist and Honorary Senior LecturerAlder Hey Foundation NHS Trust and University of Liverpool
  • “It's a real shock to us all here, Anne always managed to find strength and courage in the most adverse situations and always had a positive outlook, it's a credit to her that the charity exists and so much research has been funded to find a cure for both these conditions”

    Karen Littley, RSA Colleague & Friend

  • All of you who worked closely with Anne will feel her death keenly as she was such an inspirational figure of the RSA. Her wonderful fund raising efforts will long be remembered with awe and appreciation. Please pass my condolences on to her family, who do not know me in any way, but I would like them to know that I have been touched by Anne’s life long work.

    Avril M Braidwood
  • Anne Mawdsley, has been an indefatigable fighter for people with scleroderma for the majority of her very long life. She has probably done more for the cause of SSc people, and raised more money for SSc research, than anybody else in the world. Despite the heavy burden of her scleroderma, Anne lived well into her seventies, founder and leader of what I believe was the first Raynaud's and scleroderma Patient Support society in Europe, the RSA in the UK.

    Ann Tyrrell Kennedy, President, Federation of European Scleroderma Associations (FESCA)
  • When I was first diagnosed with scleroderma and nobody seemed to know very much about it, I joined the Raynaud’s and Scleroderma Association and would write or ring them about things that worried me.  Anne would deal with the issues personally and was a great support.  Without her I could have felt quite alone with my symptoms.  She was an amazing lady.  So sad to hear of her death.  She will be greatly missed by so many. 
    Carol Werrett
  • I was so saddened by the news of Anne’s passing; she was wonderful to talk to when I was first diagnosed & the Doctors were less than helpful. She was an inspiration to us all & when my Boss met her through his business, he was amazed when I explained who she was; he had no idea from their friendly chat, that there was anything wrong with her. That was Anne’s approach to everything & I will remember her bravery & gutsy attitude for the rest of my life. Thank you Anne.

    Penny Howard
  • Thank you for letting me know the very sad news of Anne's passing. I am still digesting it but wanted to convey that, as with many of us experiencing the varied physical and emotional challenges, I found Anne a total inspiration of coping strategies, guts and a very special humour. I view Anne's passing as a great loss but know she leaves a great legacy to continue with.

    Diane Millar
  • On behalf of the German Scleroderma Association, we would like to express our sincere condolences to you for the loss of this lovley and remarkable lady. Our thoughts are with you and her family at this most difficult time. We hope that the memory of the beautiful time you have spent together will be a small comfort and will last forever.

    Gabi & KarinSklerodermie Selbsthilfe e.V
  • I'm very sad to hear this news. Please give my sympathy to her family and friends. Anne was such a support to me and I'll never forget how welcome she made me feel when I first got in touch with her in the early '80s. I can't believe it. Bless her.

    Sarah Benedict

  • “Anne was an amazing and inspirational lady. Sending my deepest sympathy and condolences to her friends, family and colleagues. May she rest in peace xx I was lucky enough to meet her just a handful of times but my favourite memory will be when she came to speak at my 30th Birthday Charity Masquerade Ball. Unbeknown to me, she'd discharged herself from hospital in Chester earlier that day and travelled down to Essex with husband Harry, to talk to my 100+ guests about the conditions that she too suffered. When I found out at the end of the night what pains she'd gone through to be there, I tried to give her a good telling off. Problem was, we had something in common and she asked 'what would you have done?'..... I laughed and told her I'd have done the same! Bless her xxx”

    Facebook message from Nikki Hunt, Friend

  • This is indeed sad news, my sympathies to all of you who worked alongside this remarkable Lady. I am fortunate because through Anne, I was able some twenty three years ago, having been diagnosed with Scleroderma, to receive the best treatment in the world for the condition. I doubt that I would be alive today if it were not for her endeavours and influence, to be treated under the then Dr Carol Black at the Royal Free Hospital, proved to be the best advice anyone one can give. Anne has been an inspiration to the many thousand patients throughout the country not only for organising and running the RSA , but also for her initiatives in raising the funding to support it's important work and the service it offers everyone. All of this whilst being a fellow sufferer, or perhaps because of it, she made the organisation universally known, hence the cartoon in The Times newspaper, demonstrates a courageous spirit. Anne will still remain a lovely person in all our hearts.

    George C Dickson
  • "Anne Mawdsley has been an indefatigable fighter for people with scleroderma for the majority of her very long life. She has probably done more for the cause of SSc people, and raised more money for SSc research, than anybody else in the world. Despite the heavy burden of her scleroderma, Anne lived well into her seventies, founder and leader of what I believe was the first Raynaud's and Scleroderma Patient Support society in Europe, the RSA in the UK."

    Anne Tyrell-Kennedy, President of FESCA
  • I am very sorry to hear of the passing of Anne Mawdsley MBE whom I met on numerous occasions through her work for the Raynaud's and Scleroderma Association and in relation to her support for the care of Rheumatology Patients more generally. Anne drove patient involvement in scleroderma forwards with unbelievable energy and single-minded passion and determination. She raised significant amounts of money for scleroderma research. She was a friend of many rheumatologists and rheumatology in general. She will be sorely missed.

    On behalf of the British Society for Rheumatology I would like to extend my condolences to her husband and family.

    Professor Simon Bowman
    BSR President
  • "We are all devastated here at the charity about the news of Anne's passing and regard our work with even greater importance as it is a legacy that must continue. Anne’s work and personal determination serve as an example to people with chronic health conditions to maintain a positive approach and to be willing to push and explore personal boundaries and limits, in order to serve, selflessly, a cause greater than themselves”

    Liz Bevins, CEO RSA

  • On behalf of Raynaud's and Scleroderma Ireland, (RSI) I wish to express our condolences on the death of Anne. She has contributed so much to advance knowledge and care for those who are diagnosed with Scleroderma. May she rest in peace.

    Catherine ( Board Director of RSI and FESCA rep for Ireland).
  • So sorry to hear about Anne she truly was an amazing lady, I got to know her very well when her sister had car boot sales down here in Colwyn Bay, she will be very much missed by all who knew her. I also knew her mum and sister with whom I am still in contact with. I have her written memories of her day at Buckingham Palace, and her mum sent me her memories to. This truly amazing lady will be missed by all who knew her. The last time I saw her I called in on the way to our daughters, we showed each other photos of our grandchildren, enjoying a cup of coffee and generally putting the world to rights. Deepest sympathy to all.

    Janis Jackson
  • Hello - so saddened to hear about Anne. I first met here at Kings College Hospital when I too was having treatment for Raynaud’s . I did in fact help with stationary supplies as she was setting up the Association and did have many conversations with her. Please pass my condolences to her family. The best way her name lives on is that we will always think of Raynaud’s we will think Anne Mawdsley

    Penny Bell
  • “Anne was a unique and courageous individual who inspired everyone that she met, and who had outstanding vision, ability and tenacity that permitted her to build the Raynaud’s and Scleroderma Association from humble beginnings into the vibrant and effective organization of today. She will be enormously missed but leaves an invaluable legacy for future scleroderma and Raynaud’s patients, and for those treating and researching these neglected conditions.”

    Professor Chris Denton, Vice-president RSA
  • "Anne was a force of nature and (although I’m sure she would never have used the term) a tough cookie!  When I joined the RSA as a trustee, and learned more about the way she had singlehandedly created and determinedly led the Association, it rapidly became clear to me that every ounce of Anne’s efforts was devoted to making the charity a success.  She became an informed and influential advocate for scleroderma patients with the medical profession.  She made sure that the RSA got the best possible discount or deal for every item of expenditure it incurred.  She managed to squeeze funds or donations in kind from almost all the companies she interacted with for whatever reason.  And, by her annual daredevil fund-raising exploits culminating in the fantastic Cool Million appeal (entirely her creation), Anne inspired the public to donate.  Passionate and indomitable in the support of those with scleroderma and Raynaud’s, knowing many of them well and regularly keeping in touch, Anne will leave a large gap in many people’s lives.  Her own larger than life personality will live on indelibly in my memory, but I will still miss her greatly."

    Jeremy Pearson, RSA Trustee
  • “In paying tribute to Anne Mawdsley I shall, no doubt, repeat the words of others: Anne was totally single-minded in her dedication to the recognition and treatment of Raynaud's, and also scleroderma - an even tougher task. Both have been little known except to the sufferers and their doctors. Anne's piercing intellect realised that research is the key to understanding and treatment, and that has been the focus of fund raising.

    She was supremely successful at encouraging fund raising, but in the process she realised that the sufferers need empathy and contact: that she provided by bringing people together, which the annual conference does. Anne will be much mourned by all those linked in this way.

    In addition, Anne helped to break down the some of the traditional distance between doctors and patients, so that it becomes a partnership. She was able to summon up the most eminent doctors and specialists to support her aims.”

    ​Lady Veronica Piercy
  • Anne was a very remarkable lady.   I along with so many others will miss her complete understanding and empathy whenever we talked of the problems suffered by our daughter Kim in West Australia.  So much good advice and help was given. 

    It will be impossible to fill the gap left by the passing of Anne.   Her experience over so many years was invaluable to the Raynaud’s and Scleroderma Association and encouraged many donations to the association so close to her heart. 

    Truly great that her legacy lives on.

    I am only sorry daughter Kim did not get to meet with Anne.

    Rest in peace Anne

    Hilda and David Armstrong
  • I meet Anne over twenty years, when I was having treatment in the Royal Free, London. The sister told me Anne Mawdsley, wanted to pop in and meet me, I said ‘The Anne Mawdsley’ and she has been there for me ever since. Almost two years ago I lost my partner only 49 to skin cancer. Broke my heart, having no family I did phone Anne, and she always had time to talk, she had a wonderful husband, she thought the world of. We are going to miss you, but will remember all your hard work, Sweet dreams, my friend.  

    Jane Goddard.
  • I am very sorry to hear this. I filmed with Anne many years ago and she was dedicated to the cause, warm and cared a lot about the RSA and its members. It is very sad to see her go.  

    Arij Al-Soltan, Film Producer
  • There aren't enough words to say how sad and distressed we must all feel at the loss of Anne.

    Patricia Burgess
  • So very sad to hear Anne has passed away.
    She was an inspiration to us all, and reading her personal accounts many years ago gave me positive thoughts as to the way she coped.

    Liz Lloyd
  • My thoughts will be with the family and all of you who worked with Anne.  A very special lady whose determination has helped so many people and will continue to help those suffering in the future.  

    All good wishes to any in Alsager who know me!

    Pat Aitchison
  • So sorry to hear the news. Wishing Anne’s family and all at Raynaud's & Scleroderma Association the best at this difficult time.

    Liam and colleagues at Arthritis Research UK
  • "She was a great lady and an inspiration to many."

    Ellys Wakeman, GSK.
  • So very sorry to hear of Anne's passing. Such a wonderful and inspirational person, I was privileged to know her.
    My thoughts are with her family, friends, and colleagues at this very sad time. 
    With best wishes, Rob

  • 'There aren’t many women that I have swum with sharks with, dressed up as a penguin for, sky dived with swum the equivalent of the English Channel for, chatted to an Albino penguin at Bristol Zoo in the middle of winter, sat in an ice chamber with-but I did with Anne!!.

    She was a great persuader and never one to resist a challenge no matter as to the cost to her health.

    Her feats in raising awareness of the RSA are legendary-she was a brave and strong willed women who cared so much about her fellow sufferers. I will miss her.’

    ​D​avid​ Wilkie​
  • So sad to hear this sad news, she was a lovely person and a true inspiration. My thoughts go to her family and close friends. She has left a lasting legacy with the RSA.

    Anne Nequest.
  • 'I have never met anyone like Anne, an extraordinary & dynamic woman and who helped & touched so many lives. Anne has made a difference in this world in so many ways, Her fundraising skills and challenges for SSc research are legendary. Even after retirement Anne continued her commitment reaching out to people by developing the Raynaud's and Scleroderma Care and support website and helpline. I consider myself very privileged to have known Anne as a friend and colleague. As Annelise Ronnow from Denmark wrote " There is now another bright star to watch over us"

    Kim Fligelstone, Friend & Colleague

  • Thank you for letting me know this very sad news.  I spoke to Anne several times when preparing national newspaper features on Raynaud's and know how passionate she was about helping to educate people about the condition.  She never complained about her personal experience of Raynaud's/Scleroderma but when she talked to me about it, as background material, I was staggered at what she had been through.  

    Moira Petty
  • "Anne really was one in a million and even raised a "cool million" in the last few years of her life to highlight the problems of Raynaud’s and scleroderma. Never one to duck a challenge in order to bring the disease to the public's attention and raise millions for research into the cause and treatment of Raynaud’s and Scleroderma, and also to help all those who suffered with the diseases. A tireless champion for the Association and its members for over thirty years, and an inspiration to all those involved with Raynaud’s and Scleroderma - both professionals, (who were in awe of her), patients, carers and the general public - we will all miss her"

    David Scott, RSA Trustee, Chief Medical Advisor NRAS.

  • She will be greatly missed by all the sufferers of Raynaud's and Scleroderma.
    She was a great champion to raise funds and motivate others to help and we all owe her gratitude for her tireless work and efforts to keep the research going into this mysterious and somewhat debilitating condition. My thoughts and prayers are with her family and all those who worked very closely with her. With deepest sympathy,

    Eva Dios
  • Anne was a great inspiration to us all and I will never forget her kindness and advice to myself. It was privilege to have known her. May she rest in peace.

    Iris and Ron
  • I am very sorry to hear of the sad news about Anne Mawdsley MBE, she was an inspiration to us all and will be greatly missed.

    Hilda Harris
  • "As founder of the RSA Anne was for over 30 years, the singular most important driving force in spreading awareness of Raynaud's and scleroderma"

    Barry Hicks, RSA Trustee & Friend

  • 'Anne was an truly amazing person - inspirational, tenacious and courageous she dedicated her life to doing everything in her power to raise the profile of Raynaud’s and Scleroderma with both the medical profession and the general public. She found many innovative ways of raising money for both for research into these diseases and to provide welfare help and support for patients. She also had an uncanny knack of persuading people to do things that they would never have considered doing normally! This happened to me when I was convinced that driving a team of huskies across Finland was a brilliant way to raise funds. Thanks to Anne we achieved this challenge and managed to raise over £28,000 by doing so! Anne will be very sadly missed and her life’s work (legacy) will live on.'

    Jo Kaddish, Trustee RSA & Friend

  • 'Anne enriched so many people’s lives. Her achievements were incredible, and her determination and strength of character were combined with true friendship. Her legacy to Raynaud’s and scleroderma will live on'.

    Ariane Herrick
  • Our thoughts are with you all in the office and also Anne's family, I first got to know Anne from a flyer on the notice board at Glasgow Royal, approx. 18 years ago, we who are affected, will have our own loving thoughts of Anne and appreciated her kindly manner and encouragement despite her obvious poor health.

    Loraine Limond

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