Hero to Homeless - Science Has Failed Dystonia Patients, 2nd edition, #2

This 2nd edition of Science Has Failed Dystonia Patients contains a novel, Hero to Homeless, and an Advocacy Guide, What You Can Do.

Hero to Homeless is about a combat war hero, Sgt. Travis Hunter, who has dystonia and doesn't know it. No one has told him, and no one in his life knows what dystonia is anyway. Dystonia locked some of Travis's head and neck muscles to one side. He sleeps under a highway bridge. His painful post-war state dashed all hope of recovering his true self. The story illustrates the frustrating difficulties of more than a quarter of a million U.S. dystonia individuals, 70% undiagnosed.

What You Can Do renders bare the unfair statistics of research funding, the ghostly lack of public recognition, excuses by leading 'experts,' and advocacy contacts for patients, family members, and physicians.

The novel and guide question why, after 125 years of research on dystonia, there are still no oral medicines to treat the disease. NO PILLS! Do medical scientists do the wrong studies? Are they incompetent? Is dystonia impossible to cure? Not trendy enough? None of the above. The answer is in the trifling research dollars dedicated to dystonia, contrasted to funds from our government for other movement disorders per patient.

Congress funds only $20 million for research to help the known 250,000 to 300,000 people with dystonia. Other movement disorder disease funding fares better per number of patients: Huntington's Disease, $44 million for 41,000 people; Parkinson's Disease, $250 million for 1,100,000 people; and $6 million for an unknown number of people with Tourette's Syndrome. Simple division tells a clear tale. For example, $72.73 is funded per potential dystonia patient, while $227.27 is funded for each potential Parkinson's patient.

One shocking clue to the neglect is unmistakable: of 369 clinical trials currently listed by NIH, only one is for testing a potential oral (pill) therapeutic on humans.