Mark Bostock, ALD Life’s former chair.
The aim of Project Bostock is to find out what matters most to males with AMN and to help give an understanding of the issues and problems of living with a diagnosis of AMN.
Project Bostock is in honour of our late Chair, Mark Bostock. Sadly, Mark died earlier this year having taken the decision to end his life through DIGNITAS following the onset of untreatable cerebral symptoms.
As many of you know, Mark was a staunch supporter of research and worked tirelessly raising awareness of ALD and AMN.
The first stage of the project is starting in the very near future. ALD Life in collaboration with Raremark, an online service for people living with rare diseases, who are carrying out a piece of research in the form of an online survey. This will examine the impact of AMN symptoms on adult males living in the UK, including first symptoms, most impactful symptoms, services they have used, and future concerns.
We believe our proposed survey gives weight and gravitas to the power of the patient voice. The survey will be conducted with patients directly, allowing them to express their own opinions and perceptions of their health. It may also help educate healthcare professionals on the true impact of the disease, and alert them to patients’ biggest concerns so they can plan their care and treatment better. It will also be used to help direct future research into treatment for AMN, including how best to treat symptoms.
Please look out for an email inviting you to take part in this survey, completing it will give you the chance to have your voice heard.