Angry with the World. Rightly So..

[billy106 Forum Member Find all posts View Profile Close billy106]

Here I go , I am so angry , I have not seen my consultant for a year , and got a letter saying my next appointment is by Skype. I am not on any medication , offered Rizoloul , what a waste of time, all it does is gives you another couple weeks of suffering and the runs. In reality between all the continous trials and tests out there , There is nothing for MND.
I see Billions going into MND research and trials, I think its pathetic grant after grant to individuals and groups who have never produced or discovered not as much as an Asprin . Any drugs out there like Rizoloul are secondary drugs for treatment of cancer.Yes I agree we must continue to seek a cure. but really , Zilch from all those specialist centres all those medical professionals whos careers has been paid from Mnd grants.
I went to the Meet the experts at the annual MND event in Glasgow, next ones is in Australia. anyway Ive never seen so much back slapping egos in my life, and were actually giving each other awards, for what I dont know.
The bottom line is what the hell are they doing for Mnd sufferers , the answer is nothing, end off.
Alexander Fleming must be not rolling but spinning in his grave. Anyway back to the meet the experts in Glasgow, It was an eye opener , surrounded by people who are aloof to reality. the one or two Mnd sufferers there , who were looking to ask questions , more or less ignored.
In my opinion MND sufferers are at the mercy of this gravy train , who are really secondary to the career paths of others.
This is my opinion , you are welcome to disagree, but again nothing since Mnd charities have been pouring or flooding cash into some kind of hope. Anyone got a Aspirin.

[Sportingmac Forum Member Find all posts View Profile Close Sportingmac]

Hi Billy

You echo my thoughts entirely. As Dodie Weir points out "it has been 23 years since we 'discovered' Riluzole". I have been asking that question too for the last 5 years. ( I take Riluzole - my consultant pointed out that the greater benefit was to delay the onset of the Bulbar functions (if you started with limb onset) - seems to be holding true for now.

Back in the1990's it was possible to give a mouse MND and then cure it. Not much movement towards translating that to Humans. So where does the research money go? And as Prince William pointed out 'why so many charities doing the same thing?' ' why not join them all up?' I guess that is what symposiums was all about - but can't seem to see any beneficial outcomes.

Angry? Ask the fundraisers how much of their fund raising goes to pay a Chief Executive? and what do you get for the money?

I live in hope that we will join up all the MND organisation globally and then have a coordinated attack on MND. Or is there not enough profit for the big Pharma in developing a cure for MND.

Valid question I think - and they need an answer.

Regards

Chas

[Guest Close ccinjersey]

Hi Billy

I had posted this article under research and trials when came across it in April.

Its a brilliant concept to bring world scientists and researchers together under one roof to coordinate efforts. Maybe this project will bring forth a treatment/cure in the very near future, we can only hope and pray.

CCxox

*****

Project ALS and Columbia University Announce New Screening Platform for ALS Therapeutics

Published: Apr 18, 2019

NEW YORK, April 18, 2019 /PRNewswire/ -- Columbia University and Project ALS today announced the Project ALS Therapeutics Core at Columbia, a 3-year, $6.3M initiative toward the first meaningful therapies for ALS. The Core is the world's first and only partnership between a world-class academic institution and a leading nonprofit organization dedicated to a full-spectrum approach to ALS drug development, preclinical evaluation, and human clinical trials.

Core scientific directors Serge Przedborski, MD, PhD, Neil Shneider, MD, PhD, and Hynek Wichterle, PhD (Columbia), will coordinate the seven-unit effort to integrate drug candidates emanating from academic laboratories and industry with clinical research at the Eleanor and Lou Gehrig ALS Center. The goal is better clinical trials—and the first effective treatments for people with ALS, a uniformly fatal neurodegenerative disease closely related to Alzheimer's, Parkinson's, and Huntington's diseases.

The Core unites world-leading researchers and physicians to set a new standard for ALS therapy development. By applying recent discoveries in ALS genetics and biology, novel stem cell techniques, and cutting-edge technologies toward a comprehensive, efficient approach to identifying and evaluating potential ALS drugs, the Core will advance in-house therapeutic candidates and partner with industry to test rational drugs for ALS—and move validated therapies to people as quickly as possible. Already, the Core has yielded a novel drug, and evaluated dozens of commercial compounds in partnership with pharmaceutical companies.

The Core builds on two decades of Project ALS-funded breakthroughs at world-leading research institutions. "It's time for drugs that work," said Valerie Estess, Director of Research at Project ALS. "For twenty years, Project ALS researchers have built tools that allow us to screen potential drugs more efficiently. The Core is the first attempt to use all the validated tools under one roof, at Columbia, which is arguably the epicenter of neuroscience. This is our best shot to make a big difference right now."

The Core begins and ends with ALS patients—it will utilize patient blood samples toward drug screening, biomarker discovery, and genetics studies, and deliver better therapeutic options back to the clinic, to patients who have participated at the start of the process.

"For the first time, ALS patients can directly participate in research that will move us toward therapies that actually work," said Neil Shneider, MD, PhD, Director of the Eleanor and Lou Gehrig ALS Center at Columbia. "The Core provides an immensely exciting opportunity to capitalize on decades of ALS advances and translate them into meaningful treatments now."

About The Project ALS Therapeutics Core at Columbia
The Project ALS Therapeutics Core at Columbia aims to bring the first meaningful treatments for ALS from the lab bench to patients, rationally and efficiently. Under the scientific leadership of Drs. Serge Przedborski, Neil Shneider, and Hynek Wichterle, the Core integrates seven research groups—clinical research; lipidomics; gene therapy; antibody development; in vitro screening; in vivo evaluation; and in vivo electrophysiology—at Columbia's Motor Neuron Center and Eleanor and Lou Gehrig ALS Center in a world-class, patient-focused approach to ALS therapy development. For more information about the Core, contact Erin Fleming: [email protected].

About Project ALS
Jenifer Estess, her sisters and friends, started Project ALS in 1998, when Jenifer was diagnosed with ALS. Project ALS shifted the paradigm of ALS research, requiring its funded researchers and doctors to work together in small teams, toward a new standard of results-oriented accountability. In twenty years, Project ALS has overseen productive research collaborations among 25 leading institutions leading to the discovery of over 60 ALS genes, the development of the world's first patient-based models of ALS, and now, the acceleration of ALS drug testing and clinical trials. For more information, visit projectals.org.

About the Motor Neuron Center
The Motor Neuron Center, based at Columbia University Medical Center, brings together top scientific minds to understand what happens in ALS and related motor neuron diseases. By taking new leads and tools from motor neuron biology, and testing and applying them to animal models of disease, as well as to clinical research in people, the Motor Neuron Center facilitates the speedy transfer of research and preclinical findings to patients in the hope of finding effective therapy. For more information, visit http://www.columbiamnc.org/.

About the Eleanor and Lou Gehrig ALS Center
The Eleanor and Lou Gehrig ALS Center provides comprehensive care to individuals and families with ALS, PLS and related forms of motor neuron disease (MND). The Center's multi-disciplinary team of ALS physicians and associated healthcare professionals offers compassionate care to ALS/MND patients and families, and provides the resources necessary to meet the evolving challenges of living with motor neuron disease. Research activities— including genome analysis and clinical trials— are integrated into the ALS Center clinics to give individuals the opportunity to participate in the fight against ALS/MND. For more information, visit http://www.columbianeurology.org/pat...euron-diseases.