ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Friday, August 16, 2013

Happy Physicist Taught Us All A Few Things

A gentleman with ALS who went by the online name "Happy Physicist" died yesterday. 

HP taught us all much. 

He was a scientist and is best known for his constant study and experimentation on himself to see if he could unlock a clue to treating ALS.  He understood science and he knew what ALS would do to his future if he sat back and watched.  And HP encouraged all people with ALS who tried things (and they all do) to share their data.  "If it is done in secret, then it is done in vain."

There is another mark that he left that some may not remember, so I take this sad day to remind us all.

HP studied available clinical trials and signed up for one he thought had promise -- Neuraltus NP001.  HP also knew that a day waiting to fill a clinical trial was as precious as a day waiting for the FDA or for scientists.  He took matters into his own hands to get that clinical trial filled quickly.   He used every social media device known to man to let people with ALS know about the trial.  He was a gazelle.

HP was from Bloomington, Indiana, and he traveled to Lexington, Kentucky, for his clinical trial infusions.  That was a long drive but worth it to HP. On one trip, HP got online and found the ALS Association Lexington support group meeting was happening while he was there.  He showed up at the support group meeting to try to recruit his peers to give the NP001 trial a whirl.  Here's the shocker -- they had no idea of this clinical trial opportunity in their own back yard.  Several signed up right away.

So the next time clinical trial sponsors or organizations or research scientists complain about patients not willing to enroll in clinical trials, look upward and remember HP, and tell them that perhaps someone should simply tell the patients about the trials.

Thank you, God, for HP.

2 comments:

  1. Happy Physicist will always be one of the most significant contributors to the ALS community. His unwavering dedication to trying and documenting his experience with potential therapeutics for this disease will never be lost or forgotten.
    Do you happen to know if he attended clinic in Lexington as well or just went there for the trial? I am trying to get my PALS neuro to consider prescribing Nuedexta with Mexiletine--she is under the impression that this is not advised and I would like to share with her the clinic that HP frequented because I know that he was on both drugs without issue for quite some time.
    Best regards,
    MarySara

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  2. I believe Lexington was just his NP001 trial site. Try Indy ALS clinic (Pascuzzi).

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