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We do have morals, yet we will do what it takes at nomoreals.com thinking outside the box to change ALS (Lou Gehrig's Disease) into a treatable disease
Amyotrophic Lateral Sclerosis
Introduction
The Fates could not have brought upon man a crueler prophecy than Amyotrophic Lateral Sclerosis (ALS) popularly known as Lou Gehrig’s disease. The course of ALS is death of motor neurons in 3 to 5 years, in some unusual cases 10-18 years from diagnosis. In those years the body transforms merely to skin stretched over bone; muscles disappear, limbs fail, and paralysis ensues. All the while, the mind is present and aware. The voluntary muscles are paralyzed slowly, progressively, forcing the afflicted to watch in horror as it becomes impossible to move, talk, eat, drink, and ultimately, breathe. Medical intervention sustains life often for many more years.
The diagnosis is not initially apparent when a patient goes to the doctor describing a limp, a hand that seems weak or some other trivial complaint. A clue as to the truth is the eventual appearance of muscle twitching and muscle cramping. The final diagnosis usually takes a year after the person originally seeks help. This year is critical to the patient, time has been wasted that could have been used to get a jump on slowing the progression of disease. It is difficult, nearly impossible, to comprehend that this disease which has been lurking for years before the first symptoms are noticed has now arrived in full bloom. By then, the disease has progressed to a final inescapable path. It is a particular horror to be aware of one’s fate as the body fails and traps the mind.
Despite the inevitable future, ALS patients define the courage of human spirit. As the patient fears each setback cast upon him, he adapts, trying to find meaning, purpose, and hope. After accepting the diagnosis, some patients fight to obtain funding to support research for those yet to be diagnosed…for strangers, their children, or their grandchildren. Many families start not-for-profits to collect funds to pass up the ladder of science, hoping money can spur discovery. Some dump ice water on their heads to bring awareness of the ALS plight. Worldwide, patients congregate on forums and discuss the lack of treatments, the possibilities of current clinical trials or the glimmer of hope in a “new” finding. Some, including family members of those who lost the battle, hold the Food and Drug Administration responsible for the glacial pace of available medications and bitterly complain to one other. Others march to Capitol Hill lobbying for help, legislation, and federal funding. ALS patients look hopefully to the future because they know there are scientists hard at work to find a cure. Even finding a way to slow the progress of disease would be a major victory.
There are scientists in this field who do not take the inevitability of death due to ALS lightly. Clinicians treating ALS patients have heavy hearts. The doctors we spoke to take each loss personally, some getting solace as they return to the bench from the clinic determined to try another approach. The answer—to find a cure for ALS if a cure is possible—will be made by people who are actively and honestly looking for it.
Neurodegenerative Disease Research, Inc. is a not-for-profit organization that was formed with a mission to provide funding to researchers with an emphasis to identify and validate biomarkers for determining drug effectiveness in neurodegenerative diseases and facilitate pathology-based treatments to ALS patients. NDR supports open access to all findings via peer-reviewed publications.
100% of all donations fund research projects.
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