International ALS/MND Symposium Update from ALS Association President/CEO Jane Gilbert

As you may know, Chief Scientist Lucie Bruijn, Ph.D. and I are attending the International Alliance of ALS/MND Associations Symposium in Sydney, Australia.  This is an international meeting that solely focuses on ALS, which means that people from all over the world who work with patients, provide services to the ALS community, and engage in research for this disease are attending this event.  The International Alliance meeting took place here earlier this week.  Attendees spent an energizing two days at this meeting engaged in board meetings and listening to presentations from their fellow ALS organizations from around the globe that explained how they are fighting the battle against Lou Gehrig’s Disease.

More than 300 people attended the much-anticipated, live, streamed "Ask the Experts" presentation on Monday afternoon here in Sydney.  I hope many of you were able to connect and view the lectures by noted ALS researchers from the United States and United Kingdom.  Following these presentations, people from the ALS community also had the opportunity to post queries to these scientists during an hour-long question and answer session.  If you could not watch the lectures or Q & A session, these events will be available for you to view at your leisure at http://mnda.eventstreaming.tv.  Please note you must enter your name and email address followed by the password: “sydney” in lower case to access these videos.

In between these activities, I met with some of the conference’s attendees, including Dee Norris of the Forbes Norris ALS Research Center in San Francisco, and captured her impression of the meeting on video http://www.youtube.com/watch?v=k7zMgOcJtqA.  Another video highlights the “March of Faces” that shows those who have bravely fought this debilitating disease worldwide.  Andrew Fleeson, a former ALS Association Board Member who died from ALS earlier this year, is one of many courageous individuals featured in this poster campaign http://www.youtube.com/watch?v=5pxt-1dvn5o.

Today is The Allied Professionals Forum, where scientists and clinicians will present papers on everything from cognitive impairment in ALS to proper nutrition for people living with the disease.  The general sessions of the Symposium start tomorrow with both clinical and scientific tracks.  I will send additional reports as well as video cuts from the meeting.  I hope you will enjoy the information.

I can tell you one thing for sure:  There is fabulous care and research going on all over the world.  It gives me great hope and confidence that progress is being made against ALS!