Hanneke de Boer, RIP: 1946 – 2015

It is with tremendous sadness that IBE announces the passing of Hanneke de Boer on Monday 12th October, following a long illness. Hanneke was truly one of the greatest and longest serving advocate for people with epilepsy – not only in her beloved native Netherlands, but right across the world. READ THE FULL OBITUARY HERE

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It is very sad to learn of the departure of Hanneke de Boer, which to some us too impromptu. We dearly love her but her maker loves her the  most. A strong pillar behind Global Campaign Against Epilepsy has crumbled leaving us guessing how the vacuum created could be filled. No amount of words could describe the loss the IBE and ILAE communities will be struggling with. On behalf of the Ghana Epilepsy Association and on my own personal behalf, I wish to extend our heartfelt condolences to the family of Hanneke de Boer. It is our firm belief that the Almighty God will make his face shine on her and grant her rest from all her earthly labor. Hanneke de Boer, Rest In Peace.
Paul Ayisu: Ghana Epilepsy Association

We are blessed to have known a person like Hanneke. She was a woman of strength and exemplary deeds. For everything she has done for people with epilepsy, we owe her our deep admirationl and the promise we will never forget her. Thank you, Hanneke!
Rosanne Blomme-Dorme – vzw IKAROS – Patient Organisation Flanders/Belgium

 I wish to express my sincere sympathy and condolences to all family in the passing of Hanneke.
The Epilepsy Community has lost a wonderful long serving advocate and she will be sadly missed by us all! I have had epilepsy now for 42 years, am an Advocate on Facebook, Twitter and other Social Media sites, and wish to thank her for her great support.
May she rest in peace!
Kind Regards,
Lesley Donnelly: South Africa

It was with great sadness that we received the message that beloved Hanneke de Boer had quietly passed away. It is a tremendous loss to the epilepsy community around the world and in particular in the International Bureau for Epilepsy. Hanneke was admired and respected everywhere by people working in the field of epilepsy and her outstanding contribution to improve quality of life of people with epilepsy and the Global Campaign against Epilepsy  will always be remembered.
Please send my deep condolence to her family.
Shichuo Li
Dr. Shichuo Li, M.D.   Lifetime Honorary President and Advisor, China Association Against Epilepsy

Her tremendous work within the Epilepsy community and her jolly character will never be forgotten.
Frank Portelli: Caritas Malta

In Hanneke we have lost not just a wonderful advocate for all people living with epilepsy but also a wonderful friend and colleague who always knew exactly how to get anything done by anyone of us that she felt needed to happen to advance the cause for people with epilepsy. But she was also wonderful fun to be with over a glass of her much-loved red wine and Hanneke could party almost as hard as she could work. One cannot investigate any social topic on epilepsy without continually coming across “Boer, Hd” all the time. Her publications were prolific and they mean that her name will live on for future generations with an interest in epilepsy. For those of us who knew her, she will live forever in our hearts.

I would like to send Hanneke´s family my deepest condolences on behalf of EPI-APFAPE Portugal and me. Hanneke´s will be missed for all her work advocating for people with epilepsy.
Rest in Peace, Hanneke
Cristina Stuiver : EPI-APFAPE Portugal

With deep sadness I heard of the passing of Hanneke de Boer on Monday. What a loss of a longstanding friend! Hanneke was a tremendous and tireless advocate for a better life of all people with epilepsy throughout the world. Her dedication was exemplary, her commitment complete, her personality incomparable: a true ambassador for epilepsy.
With heartfelt condolences
Christoph Pachlatko : Swiss Epilepsy Foundation

Hanneke has passed away. One always struggles to find the right words to say in situations like these, and I’m afraid I’m no exception to that rule.
She appeared in Georgia in 2004 with proposal to perform the Global Campaign Demonstration Project in our country. This would be the first demonstration project in Europe. One could hardly imagine that this idea could work, but it did, like Hannekes all great ideas. She brought together people and institutions, she encouraged and taught, she spoke to government, politicians and society, she generously shared with our team her incredible energy, strength and faith. The project, which was successfully carried out in Georgia in 2008 – 2012,  raised  awareness on epilepsy  in our country to absolutely new level and brought wide  international acknowledgment to our epilepsy community.
Moreover, she stayed with us after accomplishment of this project and developed new plans, otherwise it would not be Hanneke. She initiated new cooperation between Georgia and SEIN with aim to develop “state of the art” epilepsy centre in our country and as always, she started to turn the dream into reality. As a result modern EEG monitoring unit called “SEIN –SKUH Epilepsy Centre” was officially opened in Tbilisi one year ago. Unfortunately Hanneke could not attend opening ceremony because of her illness, but despite of her health condition she was fully involved into the project until the last days, which is very typical for Hanneke and her way of life.
To say that it was a pleasure to work with Hanneke, means to say nothing, because to work with her was admirable, great and unbelievable fun, and it was incredible honor and happiness to be amongst her friends.
Natela Okujava : On behalf of the  IBE Chapter Georgia    SEIN – SKUH Epilepsy Centre

It a really a deep  sadness to hear about the passing of Hanneke de Boer on Monday 12th October, following a long illness. We present all our condolences and those of our colleagues in East Mediterranean region of IBE to her family and all professionals in IBE and ILAE.
Najib Kissani
Vice président in CEMA region

Wiadomość o śmierci Hanneke przyjęliśmy z wielkim zaskoczeniem i bólem. Nasz smutek i ból jest tym większy, że znaliśmy Hanneke osobiście. Dla rodziny składamy kondolencje i wyrazy głębokiego współczucia. Chorzy na padaczkę na całym świecie straciły wybitnego działacza walczącego o prawa do godnego życia dla chorych na padaczkę. Na zawsze pozostanie w naszej pamięci. Z głębokim smutkiem.
Tadeusz Zarębski – Poland

I express my deepest sympathies at the untimely passing of Hanneke.
She was one of the most active person and most involved in IBE. It is tremendous loss for all of PWE in the world.  I am deeply sad and grateful to her.
She taught me what IBE was. I never forgot her hospitality when I visited Heemstede. She showed almost everything in Stichting Epilepsie Instellingen Nederland (SEIN) and she invited me into the pretty IBE office in SEIN.The amaryllis that we got in DIY home center in Heemstede grows up and blooms every spring beautifully, which always reminds me of Hanneke.
I pray sincerely for the repose of her soul.
Hidemoto Kubota : Japan


Sandy Finucane : Epilepsy Foundation
The world has lost a great advocate for people with epilepsy.  Hanneke never forgot that the need and interest of a person with epilepsy for a fully integrated and meaningful life always comes first.  She was a wonderful role model and voice for epilepsy advocates, and a wonderful person as well.  Her tireless and groundbreaking work with the WHO on the Global Campaign Against Epilepsy and its implementation must continue without her  – she helped the international community set goals and standards for the entire world in how to improve life for people living with epilepsy, and for that alone we are grateful and indebted. My deepest condolences to Hanneke’s family and friends on their loss.

I am very sorry for her loss. She devoted her life to the fight in favour of people with epilepsy and she was an example of life for all who work in the world for this aim.
Receive my condolences. I will miss her very much.

Am deeply saddened to learn of the passing of Hanneker de Boer. I first Met Hanneker in 1999 and she greatly inspired me and encouraged me to work with people with epilepsy. She recruited me on the African Commission for Epilepsy which she headed then and continued to encourage me to set up a Ugandan chapter and to move around East Africa encouraging the formation of epilepsy chapters in the region. Please accept and pass my heart felt condolences to all colleagues and family. May her soul rest in eternal peace.

Mugarura Augustine: Epilepsy Support Association Uganda (ESAU)

It was simply too sudden! I never knew that the teleconferencing last September was the first and last of hearing her always bubbling voice and infectious laughter! I have known her since 2001 when I was new to the IBE. She is indeed, deeply missed!
Sherman Goh : Epilepsy Care Group

On behalf of the Epilepsy Association of Sierra Leone I write with regret having received the loss of a key holder. The passing away of Hanneke de Boer on Monday 12th a patriot who opened the doors to
improve the quality of life of people with epilepsy around the world cannot be forgotten easily. May her soul rest in peace.  
Max A. Bangura, National Coordinator, Epilepsy Association of Sierra Leone (EASL)

On behalf of Institute of Neurology and Neuropsychology, I would like to express my deepest sympathy on Hanneke de Boer’s death. We had the pleasure to know and work with Ms. Hanneke. During years of collaboration, she showed herself as dedicated professional and leader as well as excellent person and friend. Please accept our sincere sympathy to her family and all professional communities in SEIN, IBE and ILAE.
Giorgi Lomidze – Georgia

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 – colleague and a dear ally we ll 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 Chapter ILAE
Ambassador of epilepsy, ILAE

We regret that Hanneke past so soon, to soon away.  She was a tremendous power in IBE and always stood up for the social quality of life for people with epilepsy.  We will miss her and her empowerment!
Claudine Van Daele, Flemish Epilepsy League

Abbiamo tutti perso un importante punto di riferimento, abbiamo un grande esempio da interpretare.
AICE – Giovanni Battista Pesce : Italy

Greatly dedicated to the cause of Epilepsy for her full life. Always helpful, smiling and in action. My last meeting with her was at Rome in 2011. She gave me some souvenirs of IBE. She will be deeply missed by all of us .Great example to follow. May her soul rest in peace.
Dr.Pravina Ushakant Shah Mumbai India

Our deepest condolences . And much strength with this loss to the family and friends.
With regards
Epilepsie Vereniging Nederland

I am so sorry to hear this terrible news.
This is huge loss for our community.
Warm regards
Philippe Ryvlin: Co Chair Joint Task Force

Dear Hanneke, so many memories of a kind and caring friend and wonderful exciting times together. How lucky we were to have you. You’ll be missed by everyone but your inspiration goes on. Farewell my friend.
Phil Lee : Epilepsy Action UK

Hearing about the loss of Hanneke, has deeply saddened us. She is in our thoughts and prayers. Our heartfelt sympathy for all family.
EPI-APFAPE (Associação Portuguesa de Familiares Amigos e Pessoas com Epilepsia)

Lamento tanto la pérdida de tan noble e incansable trabajadora en el área de la epilepsia, mujer que cambió sin ninguna duda la vida de mucha gente con epilepsia.  Nos deja su inspiración y dedicación como ejemplo de lucha.  Hasta siempre Hanneke,
Isaac Yépez
Past President
Liga Ecuatoriana Contra la Epilepsia

This is very sad news indeed and I am so sorry she had a long illness. I last saw her in 2012 at a workshop in the Netherlands and she appeared so well then and that is how I will remember her – a powerful advocate for the cause.  I have told my team. Thank you for letting us know and please pass on to her family and close colleagues that we think of them at this time .
Kind regards
Jane Hanna
Chief Executive
SUDEP Action

Judy brought Hanneke to visit Epilepsy Connections just a few months after we were set up. Her presence filled our tiny office and in her short visit she offered such encouragement, support and inspiration.  God rest her.
Shirley Maxwell : Epilepsy Connections, Scotland

What a loss – I still can’t believe it …
She truly was a tremendous and tireless motor in the fight for a better quality of life of all people with epilepsy throughout the world.
We have fond memories of her with heartfelt condolences
Dr. Christoph Pachlatko
Schweizerische Epilepsie-Stiftung

This is a very sad news for all who have known her immense work.
Our condolences to her

Galo Pesantez: Ecuador

I am very sad with the death of Hannecke de Boer
My condolences
Dr. med. Marcelo Devilat Barros ; Epileptology Society of Chile. Chilean Chapter of ILAE

You were an inspiration to all of us – your determination and commitment was unique and you were a trailblazer in ensuring that stigma in epilepsy is addressed. Your legacy will never be forgotten
Janet Mifsud: Caritas Malta

Our condolences to the family of Ms. Hanneke de Boer. May She Rest in Peace. Her work for Persons with Epilepsy will live on forever.
Fe A. Delos Reyes, MD : Philippine League Against Epilepsy/ Epilepsy Awareness Advocacy Inc.

So sad to receive news about the untimely passing on of our colleague and Friend Hanneke. As Ann as mentioned in the obituary, she was a very dedicated person in the epilepsy movement. I remember her coming to Zambia on her own expense in 2009 to attend our first epilepsy conference. She was a very inspiring person who we shall greatly miss.
Go well my dear friend Hanneke, go well my Sister. May the good Lord remember your work when he comes in the clounds of heaven  to reedem his own and when the trumpet shall sound and the dead in Christ shall rise first and those rightious  found  leaving shall be cought up in the air to be with the Lord for ever. I pray that  you  may be among the reedemed.
May God bless your family as they finally put you to rest.
Africa and the whole entire globe shall greatly miss you
God be with you until we meet Again
Anthony Mlenga Zimba
Vice President IBE- Africa

Our condolences.  Truly sorry to read this sad news.
Helen Whitehead : Epilepsy Queensland

I express my deepest sympathies at the untimely passing of Hanneke. She was one of the most active person and most involved in IBE. I am deeply sad and grateful to her. She taught me what IBE was. I never forgot her hospitality when I visited Heemstede. She showed almost everything in Stichting Epilepsie Instellingen Nederland (SEIN) and she invited me into the pretty IBE office in SEIN.The amaryllis that we got in DIY home center in Heemstede grows up and blooms every spring beautifully, which always reminds me of Hanneke. It is tremendous loss for all of PWE in the world.
Hidemoto Kubota, Vice president : Japan Epilepsy Association

I remember Hanneke with great affection and huge respect.
Jolyon Oxley: Epilepsy Society UK

I have well known Hanneke and it is a big loss.
With all my affectionate friendship to her family and to all the IBE team.
Brigitte Bonard: HANDICAPACITÉS France

Hanneke de Boer will indeed be greatly missed amidst Edycs team as she has always been a keen supporter and collaborator in few of our programs.
Please convey on behalf of Edycs team to the bereaved family our sincere condolences.
Youssouf Noormamode : President Edycs Epilepsy Group

I am short of words as to what to say on this day as one of a personal dark day of my life. Henneke de Boer was very instrumental in the founding of Ghana Epilepsy Association in 1995 and had always supported our activities, especially when we launched Ghana Campaign Against Epilepsy- a version of the Global Campaign Against Epilepsy in 1997. Although I did not meet her personally, I always felt we were together physically in our efforts to champion the course of people with epilepsy. On behalf of Ghana Epilepsy Association, and on my own behalf, we extend our condolences to the family of Hanneke de Boer and the IBE/ILAE global family on the event of another loss of a voice and champion. We love Hanneke de Boer,  but her creator loves her the most. May her soul rest in peace.

Paul Ayisu, Secretary General, Ghana Epilepsy Association.

We will miss her terribly and have been agonizing over her illness for many months. We were close personal friends and remember warmly when she came for a visit several years ago. (one of many). She brought a Dutch family with her so they could see Washington. She was always thinking of other people.

Sincerely, Bill McLin

Condolences. I really admire Hanneke optimism and ability to do things in the right way.
Jana Zarubova

We celebrate your life of service with tears on our eyes, you may be gone but you have left a clear path for us to carry on. Rest in peace dear Hanneke de Boer.
With love from Kenya.
Judy Kariuki: Kenya

Hanneke de Boer was one of the fewer friend of our organisation. She helped us very much and she gives us idea about future projects. Unfortunately we didn’t find a way to make that things, and we are very sad about this.We met Hanneke many times. She was a warm person, a person which inspire admiration. Every time she encourage us to continue, and she helped us every time when we ask her. She came in Romania to our conferences just to support our idea and to show to other people from here that a change can be possible if we want this, and our idea even for Romania were strange, is good and must be doing. For me Hanneke was a model.
I remember when we were in Holland in 2006  and we meet her in a restaurant. We were very sad, we didn’t find money for our idea and we wanted to give up. But after that meeting we understand how important was what we do, and even we didn’t talk as lot about our problems, she made us to continue.  We admire her, we want to change things in Romania just because a person like Hanneke believe in us.
For me it’s a great lost. I’m very sad about her death, and I’m very sad that I can’t come to her funeral to give her a last goodbye. Thank you Hanneke for all that you do here and for all the people with epilepsy. Rest in peace.
Gelu Stanculescu -ANBER Romania

It is a great lost for the epilepsy comunity in the world. I am deeply, deeply sorry

On behalf of the Board of Directors of the Chilean League against Epilepsy (LICHE) and the National Association of Chilean Leagues against Epilepsy (ANLICHE), we send our deepest condolence to the International Bureau for Epilepsy and to Hanneke de Boer’s family, because of her loss.
Dr. Hanneke de Boer made a distinguished contribution to epilepsy and as a result to people with epilepsy and their caregivers, and we were honored to meet her in person, so we really sorry to hear about this news. We will miss her and our thoughts are now with her family.
Dr. Tomás Mesa :President LICHE and ANLICHE

I haven’t known Hanneke very well, but what I always heard and perceived from her, was her tremendous engagement for people with epilepsy, she was something like the soul of a global European and worldwide engagement for this disease. Thank you, Hanneke!
Holger Lerche

I am saddened to hear of the passing of Hanneke de Boer, and I realize many people have lost a blessing from God. I will keep Hanneke and her family in my thoughts and prayers.
Edward Crane

A great lady with a real commitment to the causes of patients with epilepsy.
Alexis Arzimanoglou

Hanneke Boer was a real friend and comitted expert whose advice you could always rely  on when you turned to her. She will be missed deeply by the Hungarian colleagues working in the social aspects of epilepsy  Her task is done – rest in peace.
Prof. Peter Halasz , Budapest

We had the honour and pleasure to know this wonderful woman which Hanneke was and we are very sorry to hear about her passing away. We had the greatest respect for her wonderful work and what she did for the welfare of others. Much strength to the family and friends.
With deepest sympathy
Alena Červenková : Společnost “E” / Czech Epilepsy Association, s. z.

We share the pain of all the brothers in the world for the loss of Hanneke de Boer. We were lucky to have your visit and guidance in 2000.
Our persistent work to improve the lives of people with epilepsy is the best tribute to her memory.
Julio Espinoza; Asociación Peruana de Epilepsia. Perú

It is with great sadness that we leared that Hanneke has passed away. How many of us can honestly say that we left a significant mark to other than our nearest and dearest, when our time is up? Well; Hanneke did… She was one of a kind, unique and a giant inspiration to all working for the epilepsy cause. A powerhouse of energy, knowledge and determination. Her influence on a global scale – IBE, ILAE and WHO – was clear for all to see, and she will be sorely missed. We send out deepest sympathies and condolences to her family.
Rest in peace; dear Hanneke…..
On behalf of The Danish Epilepsy Association
Per Olesen
Managing Director

Hanneke was in all things dedicated and I think she believed deeply that bringing epilepsy into the light around the world required a huge collaborative effort, something that must be shared rather than owned by any particular power group, and her life attests to the fact that she gave her all trying to build so that it would happen. She even offered to accommodate without charge anyone we might like to send to the Netherlands to look at the work they were doing there and to learn from them whatever might be useful for us. I know that Hanneke understood very deeply the need for ongoing global conversations and that it was critical that these not be captured by any particular person or power group. She was funnily enough a very powerful person herself and I recall people could have trouble getting her attention . . . because so many people wanted it at the same time and there are after all only 24 hours in a day. She gave and gave and gave and I admired her indefatigable determination to see and truly share the possibilities and to keep moving towards them. So many people who have had the opportunity to be her friend or her colleague will doubtless miss her as will those who knew her more personally. The epilepsy movement will surely miss her. And I will also miss her.
Russell Pollard : Australia

Your advocacy was unparalleled and has been a force for good resulting in permanent improvements in the lives of people and for that you will never be forgotten.
Simon Shorvon : UK

Hanneke was truly a lovely person.  Words cannot express my sadness at her passing.  She welcomed me into her heart and home.  God bless her, may she find eternal joy.
Carol D’Souza

The executive committees of Indian Epilepsy Association and Indian Epilepsy Society are extremely saddened to learn the demise of respected Hanneke de Boer, synonymous with “Global Campaign Against Epilepsy-Epilepsy Out of Shadow”. Both the organizations bow their head to this great selfless advocate and pray to God that her soul Rest in Peace.
Man Mohan Mehndiratta : Indian Epilepsy Association and Indian Epilepsy Society

The Panamanian League Against Epilepsy has recognized that Hanneke de Boer, RIP gained our admiration for her dedication to the Global Campaign Against Epilepsy (out of the shadows).
Thank you for teaching us such a wonderful and tireless work.
David Dondis, MD 
Panamanian League Against Epilepsy

Sad to see you go, Hanneke. You contributed to the lives op people who suffer from Epilepsy and their relatives more than many will ever know. Thank you! On behalf of the Dutch Epilepsy association i wish to extend our condolences to the family and friends.
Arjan Wietses, Dutch Epilepsy Association

I am deeply saddened by the news of Hanneke de Boer passing. Hanneke will be terribly missed by me, the Swedish Epilepsy Association and the epilepsy world. Her expertise and inspiration has been of tremendous importance for people with epilepsy all over the world. All of us loved her and she will be cherished in our memories forever. My heartfelt condolences.
Susanne Lund
IBE Past President