We are getting an interesting window in to what is happening at the International ALS MND Symposium in Australia via twitter. Watch for hashtag #ALSSYMP ... and thanks to @alstdi and @mndaustralia for their interesting tweets from the Ask the Experts session.
Perhaps this will plant a seed that people with a disease that steals their ability to speak and travel and be mobile deserve more opportunities to be a part of the conversation with those who are searching for a treatment. Surely there would be some synergies to these parties knowing each other better.
Yes, twitter is for more than self-serving organizational announcements.
Tomorrow night (U.S. time) the big international symposium on ALS kicks off, and the traditional "Ask the Experts" session is being hosted by MND Australia, the host organization. This year we are pleased to see that people will be able to participate online.
Take a look at that agenda. An expert moderator and four subject-area experts, each of whom will speak for 20 minutes. They have left a whole 60 minutes at the end of the agenda for Q and A.
Ok, experts, let's think about this. The title of the session is "Ask the Experts," yet you're doing most of the talking. The asking part isn't until the very end, and if it's anything like last year's session, there won't be time for over a couple of questions. Perhaps "Listen To The Experts And Ask A Question If You're Incredibly Lucky" wasn't a catchy enough title?
Let's hope that the experts keep things on schedule and don't have another commitment that will keep them from answering all the questions that may be sent their way.
People with ALS are constantly fighting the ticking clock and a healthcare delivery system that doesn't listen. Hmmm.
For those in the U.S. who are interested, timing is 10pm start EST... Access information is can be found with the agenda at the above link.
Pretend you were just diagnosed with ALS and are googling to find out what you can do to fight it. Your family members are probably doing the same thing. Have them join us in some experiments.
You go to the trusted sites of the big organizations to get information.
Go to www.alsa.org ... www.mdausa.org ... www.als.net ...
Look around at their information for new patients. Are clinical trials brought to the forefront as something that you should be considering now, before your short window of eligibility closes?
This time forget about them suggesting clinical trials to you proactively. This time pretend that you're on a mission to get some information about clinical trials. Look directly for clinical trial information and try to find a resource that you can email or call to discuss the clinical trial process. NEALS and ALSA have a dedicated clinical trial expert available. It's not easy to find the contact information, is it?
Find the most promising clinical trial for your situation.
And we wonder why ALS clinical trials aren't all full.
In recent months we have seen patient advocates take on the mission of filling clinical trials themselves by e-word-of-mouth. They realize that every day that a trial is unfilled is another day's delay in having clinical trial results. Why can't our trusted ALS organizations make clinical trial information a clear part of every new patient's action kit?