Tuesday, August 30, 2011
By Ron Leuty in the San Francisco Business Times
Neuraltus ALS drug wins FDA orphan and fast-track status!
Now to fill the few remaining seats in the trial so that we can see how fast the fast-track is.
The meeting notes from the 2010 annual ALS Registry meeting were put on the CDC's website last week, over nine months after the meeting.
We believe that the 2011 meeting may be happening this week. We hope that it doesn't again take almost a year to see the summary of the proceedings. People with ALS don't have that kind of time to wait!
Monday, August 29, 2011
Please spread the word. This is a great opportunity to raise some critical ALS awareness and have a little fun, too.
Friday, August 26, 2011
You need to get to a neurologist doing clinical trials because anything the
least bit "promising" would be experimental.
Jose Biller, M.D. upon diagnosing a patient with ALS in 1996
That was guidance that unfortunately not every patient hears on the day of diagnosis. It is important because every patient deserves the opportunity to make informed decisions regarding options to fight the incurable disease and to contribute to the knowledge of that disease for future patients. Those informed decisions cannot be made after the window of clinical-trial eligibility has slammed shut, and in the case of ALS, many patients are not even diagnosed until much of their eligibility window has passed. After 24 to 36 months after first symptoms, even if you're lucky enough to still be alive and kicking, most clinical trials won't accept you.
People with ALS get spotty information from their neurologists regarding clinical trial opportunities. Some are actually discouraged because a trial might have bad side effects. Some docs don't mention trials outside of their own institutions. Others don't mention clinical trials at their institutions. This is nuts. People with ALS are perfectly capable of making their own medical decisions. Having information is a critical part of making medical decisions. Withholding information does not help.
There is a well-kept secret that can be of immense help to patients and families who would like to make their own informed decisions. There is a clinical trial expert available via email at email@example.com or via phone at (877) 458-0631 Monday through Friday, 9 a.m. - 5 p.m. eastern time. This person is a physician and is knowledgeable on all ALS clinical trial possibilities. The position is funded by ALSA and NEALS (an ALS clinical trial incubator) and is a source for objective information to assist patients in their decisions.
Last week a message board told of a patient who was pursuing a clinical trial that was filling fast. She could not get a response from the investigator's email contact at clinicaltrials.gov. She contacted the clinical trial expert and got some action. That's progress!
Thursday, August 25, 2011
Moving Pictures, Inc. (MPI) has doubled the percentage of their profits that they donate to Alzheimer's and dementia research, excited by the recent scientific breakthrough from Northwestern University. A new University study published in Nature identifying evidence of a common cause in all forms of amyotrophic lateral sclerosis (ALS, better known as Lou Gehrig's disease), a neurodegenerative disease causing fatal paralysis, opens a door to a cure for a disease that has long stumped scientists.
Tuesday, August 23, 2011
Saturday, August 13, 2011
Friday, August 5, 2011
Mike keeps fighting for our country in ways that he never expected.