A sad farewell to a very dear friend

30th March 2017


We have news to share regarding our very dear friend, Mark Bostock, pictured above with his daughter at our 2016 Community Weekend.

Many of you knew Mark and it is with sadness that we inform you that Mark suffered deterioration in the form of Adult Onset Cerebral ALD.

He made the decision, before his condition deteriorated further, and with the blessing of his family, to travel to Switzerland for an assisted suicide. This took place on Wednesday 29th March, accompanied by those closest to him. It was very peaceful and Mark is now free from pain.

Mark’s courage and the way he lived such a positive and full life despite his diagnosis will inspire many in years to come; we are immensely proud he was such a large part of ALD Life and that he felt able to take control and make a decision right for him.

Mark was a positive influence to many, always on hand for support, demonstrated by the dozens of messages we received when we first announced news of his decision. He was instrumental in bringing together many ALD groups from around the world during his time as Chairman of Trustees at ALD Life, a post he held for several years and we can’t thank him enough for all his hard work and dedication.

Although Mark and his family see this as a very positive decision, we are acutely aware that this could be very upsetting for you to read. However, please know we are here to support you and do not hesitate to contact either Karen or Sara with any worries or questions you may have.

After discussion with Mark we will be setting up Project Bostock in his memory.  The project will use the experiences of those with AMN to develop a tailored programme of support for men, as well as promoting effective prevention and treatment of AMN and ALD.

A celebration of Mark’s life will take place at Woodlands Memorial, Bristol on Wednesday 12th April, time is yet to be confirmed. If you are able to attend, it would be wonderful to see you there, and both Sara and Karen will be attending. If you would like to meet before the service, please contact Karen and we can make arrangements.

Our thoughts are very much with Mark’s family.


20 hours ago

ALD Life

Emory University is looking for families in Georgia with individuals who were diagnosed through newborn screening with ALD, as part of efforts to include ALD in the Georgia newborn screening panel. Participants would be speaking with Emory University via phone or email at their convenience. If you would like to give your input, please reach out to Dawn Laney with Emory University at or ‪404-778-8518‬. ...

View on Facebook