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 ...
Experiment 1:
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?
Experiment 2:
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?
Experiment 3:
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?
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If you were stumped by Experiment 2, the information is --
An ALS clinical trial expert can be reached at (877) 458-0631 Monday through Friday between the hours of 9 a.m. and 5 p.m. eastern time and by e-mail atalstrials@partners.org.
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