• “I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

    - Maya Angelou

Posted: April 15th, 2014

When Ted Harada started blogging about his experience in our Phase I ALS trial, his remarkable improvement lent early hope to an entire population of patients and caregivers.  Several months ago, a patient in our Phase II trial named April started blogging about her experiences. Both of these patients started on their public journey well before their surgery, and before they had any idea of how they would do. Their sole concern was to share their experiences with their community. It takes an amazing amount of courage to share the terror and pain of a diagnosis like ALS, and as they began to understand that they were improving, to share their joy and even private feelings of guilt combined with their hopes and fears in even greater detail and depth. No one knows better than they, what hope can do for members of this community.

Now, stories from a third and a fourth patient are unfolding through the use of blogs and social media. As with Ted and April, no one knows how their stories will end. But as the trial has progressed (now through 30 successful patient surgeries) certainly our expectations and hopes have risen. This growing phenomenon of sharing their results and their trials and tribulations is one we should all cherish and support. We do not “pick and choose” whose stories we inform our readers about. In fact, we often aren’t aware of these stories until well after they are shared. The fact that all four stories appear to be positive at this time is of course fabulous for the patients. There will undoubtedly be those who take this route and the story will be different. Either way, we will continue to alert you of patients who choose to share their journey publicly as their stories become available.

The trial is going well, and we are in the midst of designing and planning for the next trial. Our Principal Investigator Dr. Eva Feldman has said publicly that she plans on conducting a Phase III trial that will hopefully start early in 2015. Of course we have to get through this one first, but we are all very encouraged by the progress to date. It should also be noted that there is no “control” study group in this trial, so there is no data that is in any way jeopardized by the fact that patients (and others) “know” they have received the drug; or have made their experiences public. This may not be the case with the next trial (First Amendment issues not withstanding), but we’ll deal with that issue when we get there. For now, I believe that the ALS community is best served by this free flow of information, and we also believe we have an obligation to facilitate that information for all of our stakeholders. They should be applauded for telling their stories and bringing hope where precious little exists.

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