2015 · 2015 International Symposium - Orlando · Clinical · Healthcare · Insights

Session 2B: Clinical management


The first of the clinical sessions covered a variety of topics related to the clinical care and symptom management of patients with ALS/MND. This session opened with Professor Orla Hardiman from Ireland speaking about the importance of specialist multidisciplinary clinics in the care of ALS/MND patients. There is evidence that patients who attend such clinics…… Continue reading Session 2B: Clinical management

2015 · 2015 International Symposium - Orlando · Clinical · Insights

ALS Heterogeneity and progression


Here’s my blog from the fascinating session 4B at the Orlando Symposium. Ammar Al-Chalabi takes the stage to a disco effect of flashing lights that might be more appropriate for the next speaker’s lurid pink suit, but he promises controversy regardless. His starting point is a definition of ALS that is about as uncontroversial as…… Continue reading ALS Heterogeneity and progression

Clinical · Healthcare

Withdrawal of ventilation support at the request of a patient: the ethical, moral and legal issues


Motor neurone disease (MND) can cause weakness in the chest muscles involved in breathing. This leads to shortness of breath and symptoms including disturbed sleep and headaches. Ventilation support allows a person to breathe more efficiently and can also extend survival. The MND Association has funded research into respiratory management and ventilation support for people…… Continue reading Withdrawal of ventilation support at the request of a patient: the ethical, moral and legal issues

2015 · Clinical · Healthcare · Insights · Scientific

Allied Professionals Forum – abstract deadline fast approaching!


My name is Rachel Patterson, and I am the General Manager of the International Alliance of ALS/MND Associations. I’m writing this ReCCoB post to make you all aware that the deadline for abstract submissions for the Allied Professionals Forum is this Monday (15 June 2015)! About the Alliance The Alliance is a membership organisation for ALS/MND patient care, advocacy and…… Continue reading Allied Professionals Forum – abstract deadline fast approaching!

2015 · Clinical · Healthcare · Insights

The wait for ProGas is over… at least for now.


Friday saw the highly anticipated publication of results from the ProGas study, which was part-funded by the MND Association. I manage the publication of evidence-based information resources for health and social care professionals at the MND Association. I can’t recall a time when I’ve felt so much pressure to delay publishing a resource due to emerging findings.…… Continue reading The wait for ProGas is over… at least for now.