Hanneke de Boer
1946 - 2015
When Hanneke de Boer died peacefully in her own home after a long illness faced with great dignity a light was extinguished on a life devoted to sufferers with epilepsy. Hanneke was one of the longest serving and greatest advocates of people with epilepsy of all ages, not only in her much loved country, The Netherlands, but across the world.
Hanneke was born in 1946 and at the age of 19 she first joined SEIN (Stichting Epilepsie Instellingen Nederland) as a vocational consultant, where she remained until shortly before her death. She was committed to empowering people with epilepsy to find employment by interacting personally with them and with potential employers. She was also engaged in the lives of her patients and often freely provided support to those struggling with their education courses.
Hanneke first became involved with IBE when she was appointed Chair of the Employment Commission in 1983. She became Editor of IE News in 1985. She served as IBE Secretary General from 1989 to 1993, as President from 1993 to 1997 and as Past President from 1997 to 2001. She never fully retired from her work and until recently was still a member of the Joint ILAE-IBE Global Outreach Task Force and Chair of the IBE Legislation Task Force. She received an impressive series of awards, including the Ambassador for Epilepsy Award (1987), the IBE-ILAE Social Accomplishment Award (2005) and the Lifetime Achievement Award (2009), the most prestigious of all ILAE and IBE recognitions. In her own country, she was inducted as an Officer of the Orange Order of Nassau by the Royal Dutch House, one of the highest (and rarely given) awards presented in The Netherlands.
Each of us had the privilege to collaborate with Hanneke, one of us for 25 years from 1989 to 2014; ER and Hanneke worked particularly closely as Presidents respectively of ILAE and IBE between 1993 and 1997 and then in promoting the ILAE/IBE/WHO Global Campaign, to which Hanneke was especially committed. It is fair to say that all the Officers of ILAE and IBE that we have met over many years were committed to the objectives of the League and the Bureau on behalf of people with epilepsy, some more so than others, but none more so than Hanneke.
Hanneke's dedication to promoting the needs and advancing the hopes and aspirations of people with epilepsy and their families by personal and collective action is testified not only by her track record, but also by our own personal observations and reflections. At the professional level she had an extraordinary capacity for detailed attention to agendas, priorities, plans of action, and minutes. But implementing such actions and goals required considerable diplomatic and social skills, which she combined with a steely determination.
In large joint initiatives there are invariably some dissenting voices, but during the many collaborative endeavours in which we worked together, relations between the League and the Bureau were excellent, in large measure due to Hanneke's patient and diplomatic attention to everyone's point of view and her persuasive powers of keeping everyone on board.
Hanneke was not a revolutionary, but she was cautiously open to new ideas. She was initially sceptical when the Global Campaign was first proposed, fearing it would undermine the finances of IBE which were always less healthy than those of ILAE. But once persuaded of the merits of the concept and the necessary safeguards, she became the most persistent and vocal advocate of the Campaign, which benefitted enormously from her detailed planning skills and determined diplomacy. We had great fun together, assisted by many colleagues, developing and launching the various "Declarations" on Epilepsy in five different continents between 1998 and 2000, culminating in the launch of the second phase of the Campaign in Geneva in 2001 supported by the new Director General of WHO, Dr. Gro Harlem Brundtland, whose speech on that occasion was a milestone in the social history of epilepsy.
Hanneke had a particular interest in empowering people with epilepsy in Africa, but she also travelled to China on many occasions and played a major role in SEIN's application to become a WHO Collaborating Centre, working closely with the China Association Against Epilepsy. Latin America was another region in which Hanneke took an interest, especially in Chile and Colombia. She spoke in the Colombian Parliament to support efforts for introducing employment legislation to protect people with epilepsy.
We remember the many planning visits that we had with Hanneke to WHO headquarters in Geneva, where just mentioning her name elicited great respect, admiration and affection. It is sad that, because of her illness, she could not participate in the considerable efforts leading to the 2015 World Health Assembly Resolution on Epilepsy, although we are sure she was deeply supportive and proud of the outcome, a natural extension of the Global Campaign.
We never saw Hanneke display anger, however frustrated by obstinate colleagues; and she could occasionally be obstinate herself. In the face of unresolvable divergence of views one of her techniques was to withdraw from communication. But she always soon emerged as her usual friendly self, often with some new approach to the problem. However, when she faced her final challenge she again withdrew from her numerous concerned colleagues and friends, sadly not to re-emerge, but leaving us full of admiration for her life, career and legacy, almost wholly devoted to the care of people with epilepsy at the local, national and international level.
Notwithstanding some early family adversity, Hanneke had a kind, friendly and generous nature. Wherever she travelled in the world she arrived bearing Dutch gifts, mostly from the workshops of SEIN. Every spring our gardens blossom with flowers of different shapes and colours which sprout from the Dutch bulbs that Hanneke gave us, and will remain a lasting memory of her kindness. When the first granddaughter of one of us was born 7 years ago, Hanneke promptly sent a pair of baby clogs, which was again typical of her generosity. Many of us felt we were part of her wider family. The door to her home in Haarlem, where she lived with her beloved cat, was always open. Countless people whom she will have met during her work, from all corners of the world, were made welcome. She loved to cook and she enjoyed a glass of red wine. Most of all, she loved to share these with her guests.
This is more than an obituary for Hanneke. It is also an appreciation, a dedication, indeed an attempt at a celebration of a remarkable individual who dedicated her life to improve the quality of life of people with epilepsy. She will be deeply missed, but her memory will always continue to inspire our epilepsy community.
Edward (Ted) Reynolds
ILAE President, 1993-1997
Hanneke de Boer, a personal reminiscence
When, in 1982, I arrived as a clinical neurophysiologist and paediatric neurologist at the EEG department, of the – then – “Instituut voor Epilepsie Bestrijding “Meer & Bosch”/ “de Cruquishoeve”” in Heemstede, Hanneke de Boer was already very much “present” in the institute and thus was among the very first persons I was introduced to and got to learn and appreciate as a colleague.
When I applied for the position at the EEG department, Harry Meinardi, then Medical Director of the Institute, also burdened me with the task of investigating the putative role of post-ictal brain oedema as a causative factor in cognitive deterioration in chronic epilepsy. The institute had just acquired a CT-scanner, extremely rare at the time, and I was to use this brand new gadget to test this working hypothesis of Harry. At the time of my interview for the job I had told Meinardi that I considered his theory wrong and the CT technology not sufficiently sensitive but neither prevented him to hire me and I still ended up stuck with this doomed project. One of my first tasks thus was to design a logistic protocol to ensure that patients who had a severe tonic clonic seizure during the day, usually in the sheltered workshop, would be transferred as quick as possible to the X-ray department for a CT- scan and again, two weeks later in an interictal state, for a second scan for comparison.
Since Hanneke at that time was predominantly active at the sheltered workshop I had to involve her in the project from the beginning and she was extremely helpful and supportive in organising the logistics in the sheltered workshop and the costly transportation, often by ambulance, from the “Cruquiushoeve” to “Meer & Bosch” and back. Severe generalised seizures, however, turned out to be less frequent than anticipated, logistics often worked against us and in the end, in a period of almost three years, we managed to collect only some 40 postictal scans which told us absolutely nothing, since there were no significant differences with the interictal scans. Thus the project, as predicted, hopelessly failed but this did not interfere with our working relationship; we both enjoyed the challenge, saw defeat coming and had a lot of fun nevertheless.
In the years that were to follow our contacts became less frequent. As a primary “diagnostic” specialist I was seldom involved with the psychosocial or vocational counselling or support programs of individual patients and only occasionally needed to contact Hanneke for cases of individual patient care.
This changed when the Polimide, a special outpatient unit with extensive diagnostic and consulting facilities, was created in Zwolle in a failing effort to prevent the creation of a – then still competitive – new local epilepsy clinic. Hanneke was very much involved in this new and very patient friendly project. I, on the other hand, was strongly against it since I predicted – correctly as it turned out – that this development would go at the expense of my department in Heemstede but Hanneke and the Polimide prevailed and eventually I joined the team as a consulting paediatric neurologist. Of course that meant seeing patients, reviewing EEGs and video's and team discussions. However it also meant lunches on the market, in front of the clinic offices in the centre of medieval Zwolle, visits to the excellent local fishmonger, joint household shopping in local shops and, yes, again: lots of fun.
These regular moments of collaboration further increased when in 2000 the Polimide evolved into “Heemstaete”, a new and complete comprehensive epilepsy clinic in Zwolle, yet under the aegis of our Mother Institute in Heemstede, where I, as head of the departments of EEG & Epilepsy Monitoring Unit, became responsible for both locations.
At that time, however, our predominant professional – and personal – contacts had shifted into another direction that for the next significant period of time was to become more important and fulfilling. By the sheer force of nature both Hanneke and I had slowly graduated from the position of promising youngsters to that of younger representatives of the older and established members of the staff. In a relatively short period of time we thus were faced with the departure of a number of the really old and more than established members of the staff and, being in the position that we were, we were burdened with the task – well, in fact, I think we made very sure that we got it – of seeing our colleagues off in an appropriate and stimulating fashion.
And thus we became symposium organisers, not just for farewell parties but also to welcome new arrivals. The retirement of Jan Overweg and Olaf Mulder, the opening of the new clinic in Zwolle, the retirement of Fernando Lopes da Silva, my own retirement, (well…) and eventually the retirement, (well…) of Hanneke herself.
Since I have been involved in the organisation of quite a number of meetings, symposia and congresses I can say that working with Hanneke on such projects was an exceptional thing and an exceptional pleasure. Her enthusiasm was enormous; her energy knew no limits and her efficiency and habit of doing everything here and now were exemplary.
My predecessor at the EEG department, Colin Binnie, once described one of the managers of our Institute – let him remain unnamed – as a person who managed to come up with a problem for every solution offered. Hanneke was the absolute contrary and managed to have already solved most if not all possible problems well before the others involved even realised that there were any. Meetings in her office, to discuss the theme for a meeting, a catchy title, subtitles for sessions, possible speakers and chairs and – if affordable – spectacular venues, thus became relaxed sessions with tea or coffee and usually something sweet as an extra, rather than stressful events. Sponsoring usually turned out to have been already arranged before the content meetings started and what in most other situations represented a period of stress, frustration and often partial – usually financial – failure, thus, working with Hanneke, was a thing of joy, fulfilment, success and, yes, again, fun.
During the last decade, following both our pseudo-retirements, we more often met abroad than in her office in Heemstede but the contacts remained, as did the projects, some realised, others (still) left undone. The last one that we discussed, shortly before the recurrence of her former illness left her too incapacitated to get this one done, was a Symposium in honour of the late Harry Meinardi, past president of both ILAE and IBE. Possibly now we should have a Symposium to honour them both.
I am sure that a great many people in the Epilepsy Community around the world will deeply miss this wonderful person who achieved so much for so many persons with epilepsy and their families and caregivers but who was also such a warm person and a friend to many.
Walter van Emde Boas
Adult and Paediatric Neurologist & Clinical Neurophysiologist
Past Director dpts. of EEG & EMU SEIN Heemstede & Zwolle
I am very sorry to hear the news on behalf of myself and and the Qatari chapter. Please send our most sincere condolences to the family.
Dr. Hassan Al Hail
President, Qatar League Against Epilepsy
Dear ILAE, IBE and Hanneke's closest,
On my own and on behalf of the Slovenian epilepsy community where many of us have had the chance to meet Hanneke here personally, as a guest of our dedicated meetings on psychosocial aspects of epilepsy, I am expressing our deepest sorrow at this loss.
Hanneke was a vivid, positive, knowledgeable lady and an energetic fighter; a colleague and a dear ally we will keep in our memory.
We had never seen her abandon the striving for the goals she had set. The epilepsy community lost a great and nice person and a memorably active member, a person who can serve as an example.
Please accept our deepest sympathy and covey our conolences to the people closeset to Hanneke.
Igor M Ravnik, MD
Past President, Slovenian League Against Epilepsy
Ambassador of Epilepsy, ILAE
Thank you for this sad message.
I was aware of the very important work Hanneke has realized along her life. I am sure this work was fruitful, and now it has to be continued. We know epilepsy remains and will remain a peculiar disease needing continuous information and education to ensure that people suffering from this disease are well accepted by the community.
We thank Hanneke for her capital contribution we'll remember in this action.
Charlotte Dravet, MD
Many of us, like Hanneke, contributed to the intellectual and political business of IBE and ILAE over the years, but Hanneke was, arguably, the heart and soul of both organizations for several decades.
I first met her in 1985, when we were both on the Scientific Advisory Board for the 1987 International Epilepsy Congress in Jerusalem. She was clearly already a driving force in IBE, and by 1993 she was President. By that time, International Congresses were becoming big business, and it was decided that we ought to officially carry out on-site investigations of prospective venues. So Richard Holmes, as the new Treasurer of IBE, and I, as the new Treasurer of ILAE, were sent, with Joop Lorber, to check out Prague. This was such a successful venture that Hanneke, and later Giuliano Avanziini, joined Richard and me, to form a future congress site task force.
Over the next 10 years, until IBE/ILAE hired Richard as their formal congress organizer, we had the enviable responsibility of visiting possible future congress sites, and often WONOEP sites: Dublin, Tunis, Buenos Aires-Iguazu-Califate, Paris-Nice, Jakart-Bali. Then later, when Hanneke and I were co-chairs of the Global Campaign against Epilepsy, we attended meetings in many emerging countries.
So, I had the pleasure of travelling the world with Hanneke, and observing her selfless dedication, not only to people with epilepsy, but to people, full stop. Hanneke was always there when needed. She cared intensely. And she invariably brought gifts, wherever she went. Many packages always arrived at my house at Christmas time; she sent wooden shoes for all three of my children, and then for all of their children, as they appeared on the scene.
Many will attest to Hanneke's tremendous impact on our field, but in addition to this, I believe that she was the kindest person I ever met. It was appropriate that Hanneke loved candles. I hope that we will be able to keep this aspect of her spirit alive in the international epilepsy community, and keep her candles burning.
On behalf of the CAA, I would like to express our warmest sympathy to the World of Epilepsy, after the death of Hanneke de Boer. I have spent many days before really being convinced that this great heart has stopped beating of generosity and kindness. I knew Hanneke personally very well. She was a real fried of mine. I visited her in her city, Schisting Epilepsy center and home at Heemstede, Netherlands, in 2001. She was always welcoming smiling, optimistic and a big fighter for people with epilepsy. We have worked a lot, with the late Leonid Prilipko, in Dakar, in WHO HQ and so any places around the world and with all the past and actual GCAE managers for setting up Regional declarations, plans of actions, training programs and social activities for the patients in need and for Epilepsy trainees.
She has done a lot for epilepsy all around the world.
It would be wonderful if her name could be always honored by setting up and naming a Prize, a Bursary, or an Award, or a scholarship dedicated to individuals or associations or institutions having achieved a great aim for epilepsy (social; scientific, field action or anything else).
May God bless her.
Deepest condolences from Africa.
Prof. Amadou Gallo Diop
Chair of the ILAE Commission on Africa Affairs
How can anyone not miss Hanneke! She was such a presence. Our heats go out to all her loved ones. Gallo's idea of a prize in her honour is a great one.
May she rest in peace.
CAA Commission member
Thanks very much Gallo for sharing this information. I was Regional Adviser for MNH African Region from 1997 to 2003 and I still remember the good times we spent together with Hanneke. The smile in the picture was real. The passion in bringing Epilepsy out of shadow in Africa was her dream.
Hanneke will be missed by many of us.
My Lord keep her soul in peace,
Dr Custodia Mandlhate
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