Visit from ALS Worldwide

The Euan MacDonald Centre had a fantastic visit recently from Stephen and Barbara Byer who are the founders of ALS Worldwide (www.alsworldwide.org). The Byers are an extremely knowledgeable and energetic couple, who are completing an international review of ALS/MND clinics and hospitals for a forthcoming book, “The Patient’s Guide to the World’s Best ALS/MND Clinics”. As Stephen Byer described it, “The consensus is that an independent evaluation by ALSWW can provide a consolidation of ideas and assist in the implementation of a clinic methodology that will help create a paradigm shift in ALS clinics. Most importantly, the patient community will now have, for the first time, an opportunity to see what “other” clinics are doing that may help their situation and to know what to request of their own practitioners.”

During their visit, the scope and breadth of the EMC, its members and collaborators made a big impact on Stephen and Barbara. It was gratifying to read in their subsequent newsletter (http://www.alsworldwide.org/newsletters.html : “We then flew to Edinburgh, where we visited the Anne Rowling Regenerative Neurology Clinic, one of the newest, most beautifully designed and equipped clinic facilities in the world for the welfare of ALS patients, complete with electric bidets, large, comfortable examination rooms and access to a complete range of superb therapeutic support. All of the patients we accompanied that day reacted very well to, and were pleased by their interaction with, the members of the Anne Rowling Clinic staff. We then met with several of the neuroscientists at their Euan MacDonald Research Centre, also under the direction of Professor Siddharthan Chandran, and who are doing groundbreaking work in both gene and stem cell therapies for the effective treatment of ALS/MND. Both of these interlocking facilities are located at the Royal Infirmary of Edinburgh, established in 1729 and are part of the University of Edinburgh.”