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Darcy Olsen, president of the Arizona-based Goldwater Institute, and Richard Garr, president of Neuralstem, a biotech company, wrote Right to Try experimental drugs in USA Today. They pointed out that this year, more than 5,000 Americans will lose their battle with ALS, commonly known as Lou Gehrig's disease. Up until recently, there was no medicine on the market that significantly improved the lives of ALS patients. But now there is one in clinical trials that holds considerable promise, but it has not been granted Food and Drug Administration approval. The average amount of time it takes to get a drug through the FDA approval process is 10 years. That's time that terminal patients don't have.
A few hours after Susan Spencer-Wendel died on Wednesday morning, her sister, Stephanie, and her best friend, Nancy Maass Kinnally, went for a walk around Susan’s Lake Clarke Shores neighborhood.
Royals legend George Brett, beloved KC golfer Tom Watson and Chiefs general manager John Dorsey reflect on what Lou Gehrig’s disease has meant to them on the 75th anniversary of the Yankees legend’s final game, which he played in Kansas City.
A cell transplant method has been proven to work for at least Parkinson’s disease sufferers .
The former Eagle has Lou Gehrig's disease, and his son plays for one of the best high school teams in Alabama. He's not the only brain-trauma plaintiff who's made this kind of decision.
Susan Spencer-Wendel, Palm Beach Post reporter, author, died of ALS
Hall of Fame first baseman Lou Gehrig played for the New York Yankees in the 1920s and 1930s, setting the mark for consecutive games played. He died of ALS in 1941............................
A terrifying diagnosis changed a young couple’s lives in an instant and now they are sharing their amazing medical story in a new documentary film: Hope for Steve.
An abstract is unavailable.
Parkinson's Therapies in DevelopmentThe Michael J. Fox Foundation Mark on Therapeutic Development The Michael J. Fox Foundation exists to speed development of a Parkinson’s disease cure and new treatments to improve quality of life for patients until the cure is found. Below we outline some drugs in the pipeline that we’ve supported — what researchers hope they do and where they are in the testing process. Click on the drug/compound name for more information and to learn about the role MJFF has played in its journey toward pharmacy shelves. Learn more about participating in clinical trials.
Former Saints player Steve Gleason is now home from the hospital, ready to conquer the next challenge in his battle against ALS, albeit adjusting once again to a new piece of medical equipment, this one to help him breathe.
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A study identified a new gene involved in Parkinson’s disease, which may lead to developments in the prevention, treatment and potentially even curing of this condition.
Advocacy groups push patients to see specialists and exercise to help treat movement diseases.
(BPT) - On July 4, 1939, Lou Gehrig said goodbye to the crowd at Yankee Stadium: "Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of the earth." The bad break he referred to was his career-ending diagnosis of amyotrophic lateral sclerosis (ALS), commonly known today as Lou Gehrig’s disease. Seventy-five years later, researchers studying ALS are using cutting-edge stem cell science to develop treatments and, one day, a cure.
Our 3rd Annual “RARE Patient Advocacy Summit” will be held on September 11-12, 2014 at the Hyatt Regency in Huntington Beach, California. Registration opens June 2, 2014. Agenda to be posted soon! ...
Via marianne vennitti
The DARPA-funded program launches this month at two prestige locations, UC San Francisco (UCSF) and Massachusetts General Hospital (MGH). This $26 million, multi-institutional research was announced last October by the President as our best chance at reducing the damage caused by a wide range of brain disorders including Parkinson's Disease, Alzheimer's, and other dementia-related illnesses.
FOR IMMEDIATE RELEASE: LOUISIANA BECOMES SECOND STATE IN TWO WEEKS TO GIVE DYING PATIENTS ‘RIGHT TO TRY’ LIFE-SAVING EXPERIMENTAL MEDICINES | Goldwater Institute
A Tasmanian researcher will use a $50,000 national prize for stem cell research which may help treat conditions like Alzheimer's disease and multiple sclerosis.
When former Gov. Paul Cellucci died in June, he left behind not only a rich legacy of public service, but a vehicle to find a cure for the neurodegenerative disease that took his life at age 65.
Imagine you were terminally ill and had exhausted all conventional treatments for your sickness. Then you hear about a promising drug that had the potential to cure you, but it hadn’t been approved for use. You might be willing to give that drug a try, figuring you had nothing to lose.
That’s the reasoning behind three states’ recent approval of “right to try” laws, where physicians may recommend potentially life-saving drugs to their patients before FDA approval.
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Unfortunately, when an unfortunate event happens in the USA, the less informed cease upon that event to involve government more into the lives of others. This seems to be more of a CYA knee jerk reaction rather than a sincere protection of the masses result. A drug that is invented and tested in the USA and may have life saving results should be available in the USA.However, the FDA's CYA regulations that make companies pay up to a Billion dollars for more test over a period of over 10 years to do more and more testing..is an over reach by the government. Medical Tourism for life saving medication is NOT be the norm, which it is today in the USA. Support the Goldwater Institute's efforts to make available life saving medication to the same people that actually invented it and the masses.
Unfortunately, when an unfortunate event happens in the USA, the less informed cease upon that event to involve government more into the lives of others. This seems to be more of a CYA knee jerk reaction rather than a sincere protection of the masses result. A drug that is invented and tested in the USA and may have life saving results should be available in the USA.However, the FDA's CYA regulations that make companies pay up to a Billion dollars for more test over a period of over 10 years to do more and more testing..is an over reach by the government. Medical Tourism for life saving medication is NOT be the norm, which it is today in the USA. Support the Goldwater Institute's efforts to make available life saving medication to the same people that actually invented it and the masses.