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Vanna's heroic fight and the discovery of Hydroxyuea:
Vanna had her first symptoms of ALS in the early part of 2000 when she had some difficulty breathing after climbing stairs. She was initially misdiagnosed with asthma. Over the course of that year she began to lose her voice and by January of the following year it became clear she was suffering from ALS or Amyotrophic Lateral Sclerosis. ALS is universally recognized as being one of the worst diseases possible. People become rapidly paralyzed and ultimately lose the ability to move, speak or breathe.
While her prognosis was grim, she chose to fight. With assistance from Neurologists Rick Olney and Josh Novic, as well as substantial support from the scientific staff at the ALS Therapy Development Foundation, Vanna bravely tried many experimental treatments. Despite her efforts, her disease moved quickly and she gradually slipped into a state of almost total paralyiss, relying on mechanical ventillation. Even in this state, however, she never gave up. Her experimentations directly caused the discovery of Hydroxyurea for ALS. Hydroxyurea is a drug previously used to treat Leukemia. After weighing her options and advice she decided to take Hydroxyurea even before the animal studies had been initiated at ALSTDF.
In her weakend condition it was difficult for her to continue taking the drug. However, it became clear to her that the drug helped restore movement in a previously unworking finger. Multiple times she saw movement lost while on drug holiday and multiple times movement came back while taking the compound. The mouse studies being conducted at ALSTDF ultimately showed the drug had a positive effect in the animal.
She leaves as her legacy a clinical trial which is being started at UCSF under the direction of Dr. Rick Olney, director of UCSF's ALS center. She wanted nothing more than to see others benefit from her efforts, to avoid the horrors she faced. Because of her advanced condition she willingly took risks others could not. She died on Tuesday October 14th, 2003 with her family at her side. She was a hero to all who knew her or knew of her efforts. She helped others even when she herself was beyond help.
We will miss her....
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