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From ALS Bites

Sep 10, 2012

An Irreplaceable Loss

RobIt came as a great shock to many of us in the PatientsLikeMe.com (PLM) community today when we learned that Persevering had passed away early this morning. Persevering was the screen name of an extraordinary man named Rob Tison.[1]

Rob was a mechanical engineer and an athlete. He spent ten years racing bicycles at the semi-professional level and he ran marathons. He was a husband and father of two. His extended family includes a twin sister. He experienced his first symptoms of ALS in January of 2009, and in March of 2010 at the age of 39 he was diagnosed with the disease.

He almost immediately made his presence felt in ALS communities on the Internet. Using his considerable talent for research and his ability to synthesize and clarify the difficult and often contradictory information available about this disease, he became an invaluable resource for many of us seeking to understand and deal with it. He did not limit his input to Internet forums. Twice he traveled to Washington DC to attend the ALSA’s annual National ALS Advocacy Day and Public Policy Conference. He conducted research into the effectiveness of the National ALS Registry and presented his results to the conference, and in May of 2012 he received the ALSA’s Rasmussen Advocate of the Year Award for his efforts.

For six months in 2011, Rob participated in the phase II trial of a drug named NP001. He and other patients reporting on PLM experienced a significant slowing of their disease progress while receiving infusions in this trial. Rob, using self-reported patient data from the site, created charts showing a clear correlation between side effects reported and slowing of progression as measured by ALSFRS.[2] It was a small sample size, and of course he could not know for sure which of the patients were on the placebo. But his use of side effects to infer which patients were receiving the drug painted an intriguing and hopeful picture.

Sadly, Rob and others who had shown slowed progression and even improvements during the NP001 trial declined rapidly in the months following it.[3] If the drug proves to be effective (and there is still considerable optimism about it), a phase III trial and the approval process that would follow will take years to complete. It is unlikely that many, if any, of the phase II participants—heroes—will be alive to benefit.

~~~

RobUntil recent weeks, Rob continued to find and pass along valuable information about ongoing and upcoming ALS drug trials to PLM and other websites. He also made it clear that he had accepted the idea that his time was coming to an end. Still, many of us hoped that his situation was not as dire as it seemed. Those who believe in miracles prayed for him; the rest of us wished we believed this would help. Today is the day we all feared would come too soon. And it was far too soon.

The seeming suddenness of his transformation from determined fighter to one who had so completely accepted his fate is frightening. I say “seeming suddenness” because we who knew him only online do not know all that transpired. But it is very difficult to contemplate the awful power of a disease that would so swiftly cut down the tower of strength we knew as Persevering.

Rob’s friends recently created a page on Facebook, PerseveringYouAreAGameChanger, and many including myself nominated him for the ALS Therapy Development Institute’s Stephen Heywood Patients Today Award to be presented next month.

I never met Rob Tison in person and I only communicated with him online on a handful of occasions, but his death has hit me hard. I will miss him. My thoughts and sympathy go out to his wife and kids, his extended family and his many friends. On September 22 when the Bachwalkers participate in the Minneapolis “Walk to Defeat ALS” I will be walking in memory of him.

Recent ALS Bites:
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Notes

  1. The photographs used here were taken from the public Facebook page PerseveringYouAreAGameChanger. [^]
  2. ALS Functional Rating Scale (ALSFRS) is the standard scale used to measure progression of the disease. It consists of a series of twelve questions about a patient’s functionality, with answers rated from 0 to 4. Thus a person unaffected by the disease would be rated 48. Average rate of decline on the scale is said to be about two points every three months. [^]
  3. Actually, Rob was enrolled in the trial for one year. Over the first six months of the trial he received periodic infusions of what may or may not have been the drug. He felt strongly, based on the presence of known side effects, that he was receiving the drug. During the second six months of the trial he and everyone else in it received nothing while researchers continued to track the progression of their disease. [^]

Sep 10, 2012

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