Ann Conroy Trust CIO

About us

The Ann Conroy Trust is a small charity, run and supported entirely by volunteers. This group is made up of patients and healthcare professionals, their families and friends. The Charity is not part of the UK National Health Service (NHS) but aims, in part, to complement the excellent work that the NHS does. The Charity does not receive any government or National Lottery funding but relies, instead, upon donations from members of the public.

The Ann Conroy Trust focuses its interests and attention upon a group of uncommon neurological conditions, which are little known about amongst the general public but which can cause a good deal of distress and anxiety to people who are affected by them. This is especially the case amongst newly diagnosed individuals, who often struggle to get reliable information about their conditions, previously unheard of by them and with strange, frightening-sounding names. The “Conditions” are dealt with elsewhere on this website.

History

The Ann Conroy Trust was established in 1980. Its original name was A.N.T.S., which was an acronym for Ann’s Neurological Trust Society. The founder was Ann Conroy, about whom you can read more elsewhere on this website. Ann died in 1992, since then, the Charity has undergone a number of changes, including its name. A.N.T.S. seemed outdated and not modern enough to attract new members and, equally importantly, financial support. The name Ann Conroy Trust was in keeping with how many modern charities are named and, of course, honoured appropriately the memory of the founder of this Charity.

Ann Conroy was badly affected by syringomyelia caused, in her case, by an underlying hindbrain hernia, or Chiari malformation. Rather than allowing this to take over her life, Ann used it, instead, as a motive to try and help others similarly affected. Having been under the care of a number of hospital specialist in her time, Ann eventually became a patient of Bernard Williams, a consultant neurosurgeon practising in Birmingham, UK. Ann was impressed by two things. Firstly, that very few people had ever heard of syringomyelia, hindbrain hernias or Chiari malformations – including, in particular, most medical professionals. 

Secondly, Ann was impressed by Bernard Williams and his dedication to trying to understand better these somewhat enigmatic neurological conditions. Bernard Williams is therefore the second important figure in the history of the Ann Conroy Trust and about whom you can also read more, on this website, or see and hear more on You Tube. When under the care of Bernard Williams, Ann Conroy was treated at the Midland Centre for Neurosurgery and Neurology, in a small industrial town called Smethwick, close to Birmingham.

In common with many such small, specialist units, the “MCNN” has long since closed down and been converted into a housing estate. Bernard’s successors now work at the Queen Elizabeth Hospital Birmingham but many former patients and staff have fond memories of “Smethwick Hospital”. The Ann Conroy Trust reached its 40th anniversary in 2020. Under normal circumstances this would have been a cause for celebration but COVID 19 prevented this milestone from being marked in the manner that we had intended. Instead, a special edition of the Charity magazine included contributions from founder members of A.N.T.S. and others involved in its later development. We have reproduced some of these here.  Despite COVID, the Charity has tried, in common with the rest of society, to adapt and survive. We aim to do so and if we succeed do then, as Bernard Williams said, it will be “largely due to the efforts of Ann” in the first place.

Trustees & Officers

Besides the trustees, many other people have made valuable contributions to the work of the Charity. Sadly, some are no longer with us but you can also read about these absent friends. In addition, many past and present members of the Charity have shared their personal stories with us over the years, some of which we have reproduced on the website.

Gill Brereton

Trustee/Treasurer


Gill Brereton was diagnosed with Chiari malformation in 2010 and underwent a decompression surgery later that year, followed by a duraplasty in 2013. Gill clearly remembers coming home after being diagnosed, with a desire for knowledge about this new feature in her life, and then coming across the Ann Conroy Trust, in the midst of lots of inaccurate and widely exaggerated misinformation. It was a vital part of her journey to understand the condition and its impact on her life. This drives Gill to support the Trust in any way she can. She is now committed to ensuring accurate information is provided to people living with the conditions, as well as their families, especially the newly diagnosed. Gill used to be a Head of Department in a college but changed career following her diagnosis, now being an accountant. This enables her to do the job she loves from home, which helps her work around her condition. She lives, with her husband, on the north-east coast of England, on the north bank of the River Tyne. She has two children and a crazy cockerpoo, Lola.

Graham Flint

Chairman

Graham Flint is a retired neurosurgeon, having practised for some 30 years at the Queen Elizabeth Hospital in Birmingham, UK.  He has been associated with the Ann Conroy Trust for over twenty years, initially as a medical advisor and then as a trustee. Following the death of former chairman Lynn Burton, he took over as chairman in 2020. Working with the Charity in the past, Graham was instrumental in setting up and running the international medical conferences “Syringomyelia 2007” and “Syringomyelia-Chiari 2018”.  He was also co-editor of the monograph “Syringomyelia, a disorder of CSF circulation”, published in 2014.  A large number of neurosurgical trainees have benefitted from watching Graham manage many hundreds of patients who live with syringomyelia and Chiari malformations, providing experienced counsel, as well as surgical expertise when appropriate. In 2006 he established the British Syringomyelia Chiari Group, which continues to provide a forum at which UK specialists can discuss difficult, interesting or otherwise instructive clinical cases. In retirement Graham now works for his wife. In addition to DIY chores around the house and garden, this also involves him in undertaking tasks for the honorary secretary of the Charity. Graham also remains available to advise colleagues at his former place of employment and elsewhere.

Marian Flint

Honorary Secretary


Marian Flint has been involved with the Charity since 2000. Initially supporting her husband Graham and helping out at AGMs and meetings of the British Syringomyelia Chiari Group (BSCG). In 2013, when Lynn Burton became chairman, Marian stepped in to take on a “temporary” role, as bookkeeper and to assist Lynn with the day-to-day running of the Charity. She then took on the role of looking after the Charity properties, as well as assisting Lynn with the organisation of Charity events. She is also responsible for mailing the Charity magazine and dealing with our incoming and outgoing post, membership enquiries and donations. To this day, Marian still carries out these “temporary” roles. Prior to working for the Charity, Marian worked for the NHS for over 15 years, in management. This experience, together with earlier administrative roles in retail, manufacturing, and business, has given her good practical and people skills, from which the Charity certainly benefits. Because of all that she does for the Charity, the trustees wanted Marian’s work to be officially recognised and gave her the title of Honorary Secretary, in 2019. Marian will continue to assist Graham in his new role as chairman of the Ann Conroy Trust. She particularly enjoys the patient meetings and, although these are hard work, Marian feels that the benefits for the membership make the effort worthwhile and rewarding.

Nick Haden

Nick Haden

Trustee & Medical Advisor

Nick Haden is a consultant neurosurgeon, practising at the Royal National Orthopaedic Hospital, Stanmore, in north London. Prior to this appointment he worked as a consultant neurosurgeon at Derriford Hospital, Plymouth, where he was appointed in 2008. Inspired by the work of the Ann Conroy Trust, he became a member of the British Syringomyelia and Chiari Group (BSCG) shortly afterwards. Thereafter his surgical practice gradually included ever more involvement with patients living with syringomyelia and Chiari malformations. He now runs a monthly clinic dedicated to patients referred with these disorders. He is working with the Charity and other colleagues in the BSCG to produce a set of guidelines, so as to assist neurosurgical colleagues in the primary investigation of such patients. He is also the current national spinal lead for the Society of British Neurological Surgeons.

Nick was invited to become, firstly, a medical advisor and, subsequently, a trustee of the Ann Conroy Trust, in 2018. He was a faculty member for Syringomyelia-Chiari 2018. Nick supervises numerous neurosurgical trainees in the surgical and nonsurgical management of syringomyelia and Chiari malformation. He now chairs the biannual surgeons’ meetings of the BSCG, as well as being an invited speaker at allied health professional meetings, as well as at patients’ meetings organised by the Charity.

Julie Millward

Trustee/Magazine Editor

Julie Millward has been a member of the Ann Conroy Trust since 2005.  She initially became aware of the Charity after being diagnosed with Chiari malformation, in 2004.   Julie underwent craniovertebral decompression surgery in 2006.  Julie received wonderful support and useful advice after joining the Charity and found it invaluable being able to meet and share experiences with fellow members, at meetings. In 2013, Julie was invited to become a Trustee. She was delighted to accept this position and feels that, through her own experiences and personal insight, it enables her to provide support to others living with Chiari malformation and to effectively carry out her Trustee role. Julie felt especially privileged to be involved with “Syringomyelia-Chiari 2018” and she is currently enjoying her role as editor of our magazine and Lay Moderator at the British Syringomyelia Chiari Group (BSCG) meetings. Julie is thankful to have an incredibly supportive family, who have witnessed first-hand what it is like for someone living with Chiari malformation and who have been with Julie every step of the way, from her initial diagnosis to undergoing surgery and her subsequent recovery. They are also great supporters of the Trust too.

Jay Jayamohan

Medical Advisor

Jay Jayamohan is a consultant paediatric neurosurgeon based at the John Radcliffe Hospital, Oxford. He qualified in 1995 at St Mary's Hospital Medical, London, and trained in neurosurgery at The Atkinson Morley Hospital, London and the Institute for Neurological Sciences, Glasgow. He then spent a year as the Rittersporn Visiting Fellow in paediatric neurosurgery at the Sick Children's Hospital, Toronto. Jay is fully trained in both adult and paediatric neurosurgery, but now spends his clinical time concentrating on the care of children and young people with neurosurgical conditions. Jay has had an interest in Chiari malformations, as part of a wider practice which stretches across other neurosurgical and craniofacial conditions. Jay feels the clinical presentations and symptoms of children with Chiari malformation are far wider than the list in the standard textbooks and one of Jay’s main aims is to work with the next generation of Chiari surgeons, to look beyond the standard teaching and work out the natural history of this condition, to allow better advice to be given to patients. Jay is also the author of Everything That Makes Us Human: Case Notes of a Children's Brain Surgeon. Jay was really honoured to have been asked to become a medical advisor for the Ann Conroy Trust. Jay feels information is key, and even more so with the increasing power of the internet, so getting access to safe, correct and accurate information is vital – both for medical teams and families and patients. The Ann Conroy Trust has been a source of validated, accurate information for many years, and Jay will endeavour to help keep that so, and expand our reach to help as many patients, families and colleagues as possible.

Sara Kewin

Medical Advisor

Sara is an Advanced/Specialist Nurse Practitioner with 27 years of experience in neurosurgery and neurology. She has always been interested in the complexity of how the brain and spinal cord work and was lucky to land her dream job all those years ago. Sara has built up her experience over the years and gained a specialist role in hydrocephalus in 2007. She obtained her Masters in Advanced Practice in 2016, whilst working full time in her specialist role and the theme throughout her studies was Chiari malformation, its management both medically and surgically and its effects both physically and psychologically on the person. Sara’s official title is now Advanced Nurse Practitioner. The most important word for her being “nurse”. Sara is proud to be a nurse and Advanced Nurse Practitioner. She is proud to work alongside some of the best neurosurgeons in the country and with the Ann Conroy Trust, in supporting those diagnosed with Chiari malformation and syringomyelia. Sara is also proud to be part of the national British Syringomyelia Chiari Group, which aims to improve the standards of care, by educating the staff who provide care to patients, which will hopefully have a positive impact upon their health and wellbeing. Sara was thrilled to be asked to become a medical advisor and for the opportunity to become involved with the Charity.

Sel Yates

Trustee/Website Liaison

Sel first became aware of Chiari Malformation when his wife, Jane, was diagnosed with a Type 1 Chiari in 1995. These were early days with very little information available outside the medical profession. Thankfully Jane discovered Bernard Williams who carried out her decompression at the Midland Centre for Neurosurgery and Neurology. This began a long association with the Charity and Birmingham, initially at meetings of ANTS finally morphing into today’s Anne Conroy Trust. Over the years he has been involved with fund raising for ACT which has included a charity auction, a community fete, open gardens, charity boxes and a coast-to-coast cycle ride where he was the support (?) driver. Sel is a retired high voltage power engineer who enjoys walking and photography in both his home of North Lincolnshire and his adopted home of the Orkney Islands where he can indulge his interest in Stone Age archaeology. He likes listening to Blues and Classical music and has been a lifelong fan of the Rolling Stones…and he enjoys the odd pint or two of real ale.

Sarah Semmens

National Local Support Groups Liaison Officer
Sarah has been a member of the Ann Conroy Trust since 2007. She initially became aware of the Charity after being diagnosed with Chiari malformation and Hydrocephalus. Sarah had a Third ventriculostomy for the Hydrocephalus in 2008. When that did not alleviate her symptoms, she underwent a craniovertebral decompression in 2009 and a further lumbar puncture in 2017, for increased pressure from the Hydrocephalus. Sarah received wonderful support and useful advice after joining the Charity and found it invaluable being able to meet and share experiences with fellow members at meetings. Sarah is also thankful to have an incredibly supportive family, who have witnessed first-hand what it is like for someone living with Chiari malformation and Hydrocephalus. They have supported her through her multiple surgeries and recoveries. Sarah enjoys spending time with her immediate family, attending the gym, camping, and riding her Harley Davidson with her husband.

Janet Sutherland

E-mail Liaison Officer

Janet was diagnosed with syringomyelia in 1994. Her first involvement with the Trust began in 1996 when she attended a meeting which discussed the future of the Charity and help which was required. Janet’s first task was persuading the company she worked for to donate £1,000.00 to buy a laptop for A.N.T.S (the Charity’s original name) – Janet succeeded in her mission. Since then, Janet’s input to the Trust has varied depending upon her work, life, family commitments and health. Over the last couple of years, Janet has written several articles for the Charity’s magazine, which she hopes to continue doing. Fortunately, Janet is at a stage in her life where her time is her own, so she now has free time which she can commit to being the e-mail liaison officer. Janet is able to use her own personal experiences of living with syringomyelia when responding to e-mail enquiries. Janet is getting used to dealing with the wide variety of e-mails the Charity receives from junk mail, invoices, newly diagnosed patients, donations, fundraising, guidance etc. She thinks the position will keep her on her toes but she is happy to be helping.

Mr. Georgios Tsermoulas

Medical Advisor

George Tsermoulas has been a Neurosurgeon at the Queen Elizabeth Hospital in Birmingham since February 2017 and he is also an Honorary Senior Clinical Lecturer at the University of Birmingham. He trained in neurosurgery in Greece and UK and had subspecialty training in neuro-oncology and pituitary/ skull base surgery in Toronto. His specialist clinical interests are disorders of CSF, including Chiari malformation and Syringomyelia, endoscopic pituitary/ skull base surgery and neuro-oncology. He has a master’s degree in clinical research from Newcastle University and a postgraduate certificate in global health from the University of Toronto. He is a council member of the British Skull Base Society. He is involved in global health work in Gaza.

Patrons

The Charity is fortunate enough to receive support and patronage from a number of individuals who have made successes of their own lives, despite syringomyelia or Chiari, and who have wanted, like Ann Conroy, to “give back” and help others affected by these conditions.

  • Jamie McDonald
  • Terry and Barbara Woods

Absent friends

In this section of the website we pay tribute to a number of individuals who have made special contributions to the Charity, over their lifetime but who, sadly, are no longer with us.

The testimonial to Ann Conroy that follows was prepared by the late Bernard Williams, shortly after Ann’s death. The picture that Bernard painted, with his own, characteristic honesty, was that of a strong-willed lady who was not prepared to let neurological disability prevent her from leading as active a life as possible. Her intent, it seems, was to help others do the same. We hope that Ann would have approved of the Charity’s current work and that she would have supported its philosophy of promoting hope and optimism, not despair and pessimism, amongst those who suffer from syringomyelia and related conditions.

“Ann Conroy was born in April 1943, in the heart of war-torn England. Her father was in the Royal Air Force at the time, on active service. Ann’s birth was not completed until forceps were used, on the fourth day of her mother’s labour. It is very likely that these events had a direct bearing on her later development.

Ann was a lively and apparently normal child at first but, by the age of 8, she was beginning to develop deformities affecting her skeletal system, including a bending of her spine – the condition referred to as scoliosis. The underlying cause, undiagnosed at the time, was syringomyelia, creating muscle imbalance and making her spine lopsided. She was also a somewhat chubby child and, together with the bending of her spine, this gained her the rather cruel nickname of “elephant” at school. Ann nevertheless bore this with good cheer and excellent humour.

Later, Ann began to develop severe head and neck pains. She went on to lose pain and temperature sensations from her hands and arms. By the age of 16 she was dropping things from both hands and suffering burns, from hot objects that she couldn’t feel. She underwent medical investigations from the age of 18 onwards but it wasn’t until she was 31 that the correct diagnosis was made, that of syringomyelia, caused by an underlying Chiari malformation. At this stage Ann was also partly blind, had developed a serious skin condition and had high blood pressure. The syringomyelia was advancing rapidly and had partly paralysed all of her limbs. It had also taken away, from them, a large amount of normal sensation.

Ann underwent surgery, in Edinburgh, in 1975, the operation being carried out by Edward Hitchcock . She made a good recovery and, having been almost bed-bound for some years, she became mobile once more. Ann was sent to the Midland Centre for Neurosurgery and Neurology, near Birmingham, in 1979. Her associated diseases by this time included kidney failure, heart failure and a tendency to deep vein thrombosis, for which she was receiving blood-thinning drugs. There was, by then, nothing more that could be done for Ann, surgically. Indeed, at no time did Ann harbour unrealistic hopes of further recovery and she accepted the way things were for her. She did not, however, accept that nothing could be done for other people, who might face similar problems in the future. While still a patient in the Midland Centre, Ann duly announced that she was going to found an organisation to solve the problems of syringomyelia. Bernard Williams, who was looking after Ann at the time, thought that she simply should go home and take it easy; it seemed, even at that time, that Ann would not be long for this world.

Ann duly went home but did not take it easy. Instead, she set to work. She drummed up support from amongst her family and friends and announced the formation of Ann’s Neurological Trust Society (ANTS) . She became president of this industrious group and inspired everyone who came into contact with her. Ann had a strong personality and, as a result, occasionally fell out with people but nobody could have failed to have been impressed by the resolution and determination with which she faced up to everything. People who telephoned her, from all over the world, were always sure of a sympathetic hearing. She was neither excessively optimistic nor was she pessimistic. She was just realistic. Her council and advice and, above all her example, were an inspiration to hundreds. The money that Ann raised, with the help of her many energetic companions, enabled a dedicated syringomyelia clinic to be set up at the Midland Centre for Neurosurgery.”

The above account of the life of Ann Conroy is an edited version of an original biography written by the late Bernard Williams. The final paragraph of that account stands out: Ann died in Leicester Royal Infirmary on 6 December 1992, just a few miles from her home, where she lived, with her parents, up to the end. She may not ever have been fit to work, or to marry, or to bear children, and she may never have travelled far in her lifetime, but the journey of her spirit was immense. The work that she did will surely continue.

Bernard Williams was a neurosurgeon who practiced in Birmingham, UK. He had a career-long interest in the conditions of syringomyelia and Chiari malformations. His meeting with Ann Conroy, who became one of his patients, resulted in the founding of the charity that now bears her name.

Bernard was born and brought up in Stockport, in the north of England. He went to university in Birmingham, qualifying as a doctor in 1955. After military service, he worked in London and went on to begin his neurosurgical career, at the National Hospital for Neurology and Neurosurgery. He then returned to Birmingham, where he completed his neurosurgical training. His first consultant post was back in the north of the country, in the city of Hull. He worked there for three years before returning to Birmingham, where he continued to work until his untimely death in 1995, at the age of 63.

Bernard’s interest in syringomyelia began at an early stage in his career. He was asked by his professor to present a case of syringomyelia at the regular, weekly clinical meeting. He duly went to the medical school library to read-up on this strange disease, which he had not encountered before. He realised that he simply could not understand the condition and therefore set about trying to do so, something which he continued to do throughout his career.

Bernard went on to publish extensively on the subject of syringomyelia. Many of his papers describe the results of his original research but he also composed many articles for post-graduate teaching journals, as well as contributing chapters to several specialist textbooks. His work was not confined to the field of syringomyelia and Chiari and he made important contributions to our understanding of other disorders of cerebrospinal fluid circulation. His work was recognised by the award of the Cassey-Holter memorial prize, in 1977 and the Pudenz prize in 1994 and he received further honours from the Royal College of Surgeons of England.

Even today, papers published in the medical literature quote the theories put forward by Bernard Williams. His term “suck and slosh” is frequently mentioned, this being his proposed mechanism to explain how syrinx cavities enlarge. Bernard also frequently used the term “filling mechanism”, again to refer to how syringomyelia cavities form. He is responsible for identifying how high amplitude venous pressure waves, generated by coughing, bending over or physical straining, produce the short-lived but severe headaches that trouble many people who have Chiari malformations.

As a person, Bernard Williams was extraordinarily self-effacing and modest, to a degree that belied his remarkable intelligence. He was an enthusiastic teacher, always encouraging students and young doctors to see the fascination in clinical neurological science and to share his enthusiasm in this field. He had an open-minded approach to whatever subject he considered and was always completely honest in what he said. When operating he paid meticulous attention to detail. When results were not as good as he wanted, he would agonise over the reasons why and always seek to improve himself.

Outside the world of neurosurgery, Bernard Williams had a passion for the game of chess, a talent supported by his extraordinary memory. It was therefore very fitting that his widow chose a chess-piece as the headstone for his grave. Bernard died riding his motorbike, a victim of the impetuous haste of morning rush-hour traffic. There are no lengthy, wordy inscriptions on his grave, just his dates, preceded by what he wrote at the bottom of any letters – “Bernard Williams, Neurosurgeon”.

Bernard Williams left behind him many of his former patients, who remembered him with fondness and gratitude, as well as many neurosurgeons who trained under his direction. For a further account of Bernard Williams’s career, view the YouTube video here.

Phil had been with the Ann Conroy Trust for many years and was one of its most effective fundraisers. Phil had contacted the Charity in 2002, having been diagnosed a year or two earlier. Phil had then seen a neurosurgeon, listened carefully about a possible role for surgery in treating his condition, before politely declining the offer. Phil said, on more than one occasion, “if it ain’t broke then don’t try to fix it”. By “broke” Phil can only have been referring to his enthusiasm for life.

Phil had been forced to give up his HGV licence and was looking for something else to occupy some of the time previously spent driving. Fundraising became just that purpose and Phil set himself a target of £10,000, to raise for the Ann Conroy Trust. It was not long before he increased that figure to £40,000. Members who have been with the Charity for some years will remember Phil’s regular column, between the spring of 2005 and the summer of 2010, in what was then our newsletter. He also helped running the Charity’s helpline. He conducted an awareness campaign about Chiari and syringomyelia. Phil always encouraged new members to join us. Phil was awarded the Ann Conroy Trust medal in 2016. The inscription on the reverse of his medal read “For Tireless Fundraising”.

Phil died from a pulmonary embolus on 3rd March 2017. This was completely unrelated to his Chiari malformation, with which he had lived for many years – probably since childhood, judging from what his sisters have since told us. He demonstrated well how somebody can live with and cope with the effects of the condition. The front page of the order of service at Phil’s funeral said:


A smile for all, a heart of gold
One of the best this world could hold
Never selfish, always kind
What a beautiful memory to leave behind

When the Charity moved from its home in Dunchurch, at the beginning of 2013, it needed help with the production of our regular newsletter. It was the lovely Helen Cochrane who came to our rescue and it soon became obvious what a talent we had working with us. The first issue of what is now our full-colour magazine was the stunning result of Helen’s labour and talents. The following editions just seemed to get even better. Contributions from members flowed in as a result and Helen made full use of these as well. What none of us knew, at that time, was that Helen was fighting a battle against cancer which, very sadly, she lost on the 30th September this year. Her funeral was held on 17th October 2014, at the Church of St Nicholas in Kings Norton, Birmingham, where she now rests.

Incredibly, Helen was working on the Charity magazine right up until a few days before her passing. If any of our readers had spotted minor errors in the last edition of the magazine then you might well wonder that there were so few, given the challenges that Helen was facing. What impressed those of us who knew Helen and who worked with her in the production of this magazine, was her incredibly cheerful and optimistic approach to life. Never mind the cancer, she was intent on completing her current edition of the magazine and looking forward to working on the next*. Such an optimistic approach to life, despite its many adversities, is an example to us all and illustrates well what we stand for in the Ann Conroy Trust.

Helen’s association with the Charity was all too brief and her life was cruelly cut short but her memory lives on with all those who knew her well. Her tremendous contribution to the Charity, at a time when we faced significant challenges, was invaluable.

Ed Oldfield was an American neurosurgeon who made significant contributions to the advancement of modern-day neurosurgery. His work was by no means confined to those subjects which interest this charity but he is associated with elucidating the “piston” mechanism which, we believe, may underlie the filling of syringomyelia cavities.
When the Ann Conroy Trust organised the international symposium, “Syringomyelia 2007”, Ed Oldfield was one of the many international experts who attended the Rugby meeting. Charity officers who were involved with the event will recall just what a friendly individual Ed Oldfield was and how supportive he was of what the Ann Conroy Trust was doing. We were saddened to learn of his death but, at the same time, proud that he had been associated with us, along with so many other, much more august bodies.

You can read more about Ed here: Obituary. Edward H. Oldfield, MD, 1947–2017 in: Journal of Neurosurgery Volume 128 Issue 2 (2017) (thejns.org)

Whilst many people have made tremendous contributions to the Charity, over many years, it is arguable that, after Ann Conroy herself, nobody did more for the Charity than Lynn Burton.

Lynn’s involvement with Chiari and syringomyelia began many years beforehand. As is so typical of these conditions, her diagnosis was delayed for several years. In due course Lynn underwent the first of what turned out to be a series of operations, in an attempt to control her symptoms. It is true to say that she never really gained adequate relief but, typical of Lynn, she realised that she must live with the conditions, as do so many people like her. Indeed, Lynn was very much a proponent of “living with”, as opposed to “suffering from” Chiari and syringomyelia.

Lynn joined the Ann Conroy Trust, as a member, in 2004. Before long she became more involved, as a Facebook moderator and as a member of the Charity’s helpline support team. She was invited to become a trustee in 2012 and, the following year, was appointed as chairman. A huge challenge lay ahead of her, with a great deal of work to be done, but Lynn threw herself into the task with enthusiasm and determination. Her numerous achievements included the establishment of new offices and storage facilities, re-organisation of Charity finances and establishing new lines of communication with the Ann Conroy Trust. The magazine was given a new look and fundraising efforts increased. The British Syringomyelia Chiari Group was re-energised, such that we now have a group of younger, actively involved hospital consultants and trainee specialists, who should ensure that this valuable resource continues to be of benefit to patients and their families well into the future. Patient meetings have continued to flourish, to the benefit of all those who look forward to attending these annual events. We even managed to organise another international medical symposium, some ten years on from the original meeting, held in Rugby, in 2007.

In addition to this organisational and teamwork, Lynn gave a great deal of her personal time to individuals living with syringomyelia or Chiari. She would willingly answer the Charity helpline – which had been linked through to her home telephone number – at all hours of the day and night. She was particularly supportive to newly diagnosed people who, understandably, had often developed anxieties. They had been given their diagnosis by a hospital specialist, often in the very limited time available for out-patient consultations, and not all of this information may have made sense. Talking to friends, nobody else ever seemed to have heard about these rare and frightening-sounding conditions, with such strange names. The internet beckoned, often with alarming results Very often, therefore, the first thing that Lynn would hear would be tears. She knew to wait and to let somebody talk. She would listen, explain and support. Lynn became a rock for many people.

When, in 2018, Lynn was diagnosed with a rare form of cancer she, once again, adopted a positive attitude. She underwent yet more surgery, followed by radiotherapy then several cycles of chemotherapy. Throughout this period she maintained her contacts with the Ann Conroy Trust and, whilst no longer able to run Charity affairs directly, Lynn continued to make valuable contributions. She was answering e-mails up until a week before going into the Dove House Hospice.

In addition to family members, Lynn left behind her a large number of friends, from both her personal life and her life with the Ann Conroy Trust. Equally importantly, she leaves behind scores of people who she has helped over the years, people who live with Chiari malformation and syringomyelia, all of whom owe a great deal to Lynn. For the personal friendship and support that she extended to them, not to mention all the work she carried out, publicly and behind the scenes for the Ann Conroy Trust, many of us owe a profound debt of gratitude to Lynn.

Fiona was brought up in Birmingham but studied Occupational Therapy at university, in Derby. She later studied complementary therapies, back in Birmingham at Bournville College. Fiona worked as an Occupational Therapist in various settings in Birmingham, including Birmingham Heartlands Hospital, the Royal Orthopaedic Hospital, the Queen Elizabeth Hospital, Moseley Hall Hospital and, most recently, at the West Midlands Rehabilitation Centre in Selly Oak. Throughout these appointments Fiona spent many years working with neurological patients.

Fiona first became associated with the Ann Conroy Trust when she volunteered to demonstrate complementary therapies at some of our earlier annual meetings, held at Ryton Gardens, near Coventry. She later delivered entertaining and informative lectures on Occupational Therapy and related subjects, again at annual meetings. She became a trustee in 2010, making valuable contributions to discussions and decision-making.

Fiona was diagnosed with a rare gynaecological malignancy in January 2020, following her first noticing an unusual and rather painful lump in the previous April. She went on to undergo 3 operations, 4 cycles of chemotherapy, radiotherapy and 2 cycles of immunotherapy. She had to raise the money herself for her immunotherapy as it was not funded on the NHS for her cancer type. Due to the Coronavirus pandemic there were no visitors allowed in the hospital; it was certainly a very lonely time for all hospital in-patients. Unfortunately Fiona’s treatment did not work and the cancer carried on growing, spreading around her body. Fiona therefore chose to stay mainly at home during her final months and weeks because restrictions in place at the local hospice would have deprived her of visits from those she loved. She was cared for at home by her husband Dan and her sister and brother. Close friends and family were able to visit her there, masked of course. Fiona’s input was of great value to the Charity and it was therefore a great loss when she died, at the tragically early age of 46, from her cancer.

Historical Figures

Besides people who still exist, in some of our living memories, it is appropriate that we also acknowledge a number of individuals of historical importance, when it comes to those conditions which are of interest to us. A question that people sometimes ask is, just who was Arnold Chiari? This is because Chiari malformations are still, sometimes, referred to as Arnold-Chiari malformations. The hyphen in this term – if, indeed, it is included – gives it away; there were two individuals who, historically, gave their name to the condition now mostly referred to as Chiari malformation. These were Hans Chiari and Julius Arnold.

When medical conditions are referred to by the name of an individual, in this way, they are known as eponyms. The problem with eponyms is that they tell us nothing about the conditions to which they refer. The World Health Organisation therefore discourages their use. Unfortunately names like Parkinson’s disease are so well known, and the terms so widely used, even outside medical circles, that it is unlikely that they will be abandoned. The old-fashioned term “paralysis agitans” is unlikely to displace “Parkinson’s disease”. Likewise, hindbrain hernia is unlikely to displace Chiari malformation, or “ACM”, in common parlance, even though it is a much better, descriptive term.

Hans Chiari

1851 – 1916

Hans Chiari (1851 – 1916) was Professor of Pathological Anatomy in Prague where, in 1851, he published his first description of the anatomical malformation that now carries his name. More detailed accounts followed, in 1895 and 1896. Despite Julius Arnold’s name being later added to the eponym, and despite Chiari having acknowledged the earlier contributions made by John Cleland, it is Chiari who is most widely acknowledged as having done the most, back in the mid-19th century, to identify and characterise the condition that bears his name. Chiari also described an entirely unrelated condition, affecting the liver, and which also bears his name. An English physician, George Budd, also contributed to describing this condition, which is referred to as the Budd-Chiari syndrome. Arnold-Chiari and Budd-Chiari are otherwise completely unrelated disorders.

James Gardner

1898 – 1987

James Gardner (1898 – 1987)  was an American neurosurgeon who was, arguably, the first person in the era of modern medicine to pick up the syringomyelia-Chiari baton, left by Cleland, Chiari and Arnold. In particular, he attempted to explain just why syringomyelia cavities developed, as a consequence of Chiari malformations. His explanation was that arterial pulsations drove cerebrospinal fluid down into the spinal cord. Bernard Williams took issue with this theory, claiming instead that the “filling mechanism” was more likely to be due to movement of cerebrospinal fluid brought about by coughing, straining and similar, physical exertions. The conflicting theories of Gardner and Williams are still referred to by specialists writing in medical and scientific journals.

Julius Arnold

1835 – 1915

Julius Arnold (1835 – 1915) was Professor of Pathological Anatomy in Heidelberg. He published, in 1894, a paper describing further anatomical details about the condition that, frequently still, bears his name.

John Cleland

1835 – 1925

John Cleland (1835 – 1925) was Professor of Anatomy at the University of Glasgow. Although not widely appreciated, it was Cleland who first described what we now refer to as the Chiari malformation, in his publication of 1883.

Mythology

It is the term syringomyelia that causes the most consternation when it comes to those conditions which interest the Charity. To start with, it is a bit of a tongue-twister generating, when first heard, comments like “swing on my what, did you say”. Like so many medical terms, syringomyelia has its origins in classical language – Latin or Greek. In this case the word derives from Greek mythology, the story of a character by the name of Syrinx. As with quite a few tales from Greek mythology, there are slightly naughty aspects to this story which probably qualifies for a PG rating.

In Greek mythology, Artemis was the goddess of hunting and a famous virgin. One of her followers was Syrinx who was a nymph, sometimes defined as “female spirits” of nature. Another group of characters from Greek mythology were the Satyrs. These were described as “demonic spirits” of nature. One such individual, half man and half goat, was Pan, the god of shepherds and their flocks. Pan was described as a “highly sexual” individual who tried to seduce, amongst others, the goddess Aphrodite. One day, he encountered Syrinx and turned his attentions on her. She fled but became trapped by the banks of a river. She pleaded to the gods and her sisters, the water nymphs, for help. In response, they transformed her into a bed of weeds. Pan, as he lunged to grab Syrinx, found himself holding a bunch of reeds instead. He sighed with resignation and, as his breath passed over the bundle of weeds now in his hands, musical notes were emitted. This is how Pan-pipes got their name and they are regarded as the traditional musical instruments of shepherds. At the same time, Syrinx gave her name to various tubular structures, in zoology, botany and elsewhere. The word syringe, of course, has this derivation. The Lilac plant genus has the Latin name “Syringa”, which it gets from its hollow stems.

The second part of the term syringomyelia derives from the Greek word meaning marrow. The marrow inside long bones generates the cellular and other elements of the blood. When we look at an articulated spinal column we can see that it, too, takes the form of a tubular structure. Early anatomists, looking down this “tube” would have seen that it too was full of “marrow.” This marrow, however, is very different in nature from the marrow inside long bones and is, of course, the spinal cord. The combination of “syringo-“ and “-myelia” refers, therefore, to tubular cavities within the spinal cord. In life, these cavities are filled with cerebrospinal fluid.

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