Hanneke de Boer (1946 – 2015)

It is with great sadness that the ICNA announce the death of Hanneke de Boer a great advocate for epilepsy not only in her native Netherlands, but all across the world. Hanneke had dedicated her entire professional life was dedicated towards improving the lives of people with epilepsy. 

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 till the end. In her early years she worked to open career doors for people with epilepsy by engaging employers and educating them about the issues faced by potential employees with epilepsy while at the same time gently pushing her clients into the working world. By her ability to encourage and persuade, she opened up life opportunities that people had never thought possible. She took her ability to encourage and persuade to the international stage. 

She started with the International Bureau for Epilepsy as the editor of Newsletter and served on the Executive Committee before she became the IBE President. She was also a long standing member of the Executive Committee of the ILAE. She became Secretary General in 1989 and served as President from 1993 to 1997 and Past President from 1997 to 2001. 

Her greatest achievement was 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. 

She was also one of the great voices to end the stigma that many people with epilepsy face in their private and public lives. The benefits of her efforts have been seen in the many laws passed assuring the rights of people with epilepsy. The recent WHO Resolution on Epilepsy was the most recent benefit of her early efforts. 

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, one of the highest awards presented in the Netherlands. 

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

(with additional reporting from ILAE & IBE)