The International Symposium on ALS/MND has closed its doors after three insightful, inspiring and hopeful days!
This year’s event in San Diego really has showcased the breadth of research happening around the world and reminded us all how many amazing scientists are dedicating themselves to adding more pieces to the puzzle and finding effective treatments. We’ve heard more than 100 talks and seen over 290 posters presented by researchers at all stages of their careers. As with every year, the range of research topics presented has been vast. From biomarkers to genetics, pre-symptomatic disease to cognitive change, we’ve heard the very latest updates on research from across the globe.
In the closing session, Dr Jeffrey Rosenfeld presented his research on disease progression in different types of MND and the importance of recognising this in clinical trials. MND isn’t the same for everyone – people have different symptoms, rates of disease progression and prognoses. This is well recognised by scientists and clinicians, but is often not taken into account for clinical trials. This means a treatment may fail in a clinical trial, even though it may work for some people with the disease. Dr Rosenfeld and his team looked at clinical information from over 1,000 people with MND and grouped them based on where their symptoms began. He found these different groups of people had different rates of disease progression and survival times. He shared the importance of using these groups in clinical trials so it can be seen if a treatment works well for one group but not another. He suggested future clinical trials should study different groups of people with MND separately to increase understanding of the differences in the disease and find more targeted treatments for everyone.
The final talk of the Symposium was delivered by Steve Gleason who has MND. Steve is a former professional American football player and was diagnosed in 2011. He and his wife have founded an organisation in the US called Team Gleason to empower people living with MND to live purposeful lives, through providing access to technology, equipment and care. Steve spoke about his MND journey since his diagnosis in 2011, and how he uses eye-gaze technology to communicate, drive his wheelchair, control systems within his home, including lights and the thermostat, and create artwork. His passion for advances in technology shone through and he shared how Team Gleason has been helping other people with MND to access this technology and working with tech companies to improve it and make it more effective and powerful, while also keeping costs down for users. He also described what new technology is on the horizon; avatars built to look and sound like us, expansion of virtual reality technology to increase experiences from home, brain computer interfaces (BCIs) to allow someone to control devices through thought and robotic suits to enable movement. He ended the Symposium by inspiring everyone in the room to continue the work that they do, saying “Today it might feel like a hair-brained pipe dream. Tomorrow it might revolutionize the world. And if it doesn’t revolutionize the whole world, it will revolutionize the world for someone”.
We’re already looking forward to the 37th International Symposium on ALS/MND! See you in Amsterdam next December! Until then, Steve’s words will be ringing in our ears to “Go set the world on fire”.
