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.

Hanneke began her professional life as a vocational consultant at Stichting Epilepsie Instellingen Nederland (SEIN) in Heemstede, the Netherlands in 1965 and would continue to work there almost to the end of her life. Her main interest was in empowering people with epilepsy to find gainful employment by working with both people with epilepsy and employers. However, hers was always the personal touch, and it was not unknown for her to provide ‘out of hours’ support to those struggling with their education courses.

Hanneke first became involved with IBE when she became Editor of IE News in 1985 becoming a member of the Executive Committee. She became Secretary General in 1989 and served as President from 1993 to 1997 and Past President from 1997 to 2001.

The achievement of which she was most proud was the launch of the ILAE/IBE/WHO Global Campaign Against Epilepsy ‘Out of the shadows’ in 1997 in which Hanneke and (then ILAE President) Ted Reynolds had worked so tirelessly to introduce.

She was a co-chair of the Global Campaign for many years, later becoming Secretary of Global Outreach in 2009 and a member of the Global Outreach Task Force in 2013. Within the work of the Global Campaign were efforts to close the treatment gap, which was achieved to a tremendous degree in China.

Her work was recognized by the large number of awards with which she was presented. She received the IBE/ILAE Ambassador for Epilepsy award in 1987, the Social Accomplishment award in 1995 and the Lifetime Achievement Award in 2009. Her dedication was also recognized at national level in the Netherlands. She received the Award of the Christian Society for the Care of People with Epilepsy in 1982, was awarded the Spike and Wave award of the Dutch Branch of ILAE in 1997, and was inducted as an Officer of the Orange Order of Nassau by the Royal Dutch House. This is one of the highest awards presented in the Netherlands and is rarely given.

Hanneke’s words  live on to remind us of the importance of the task that we still have.

Hanneke had tremendous energy and drive. There was never a locked door to which she would not eventually find the key and her will to improve the quality of life of people with epilepsy around the world was unfailing. For this reason she was known, respected and loved by hundreds of people in every corner of the epilepsy world.

She never fully retired from her work and, until recent months was still a member of the Global Outreach Task Force and Chair of the IBE Legislation Task Force.

She will be deeply missed.

If you would like to sign our Book of Condolences, please click here