Posted by Site Administrator on March 1, 2013
Because of the relentless effects of ALS, a diverse group of ALS voices — patients, families, organizations and the community — came together to speak about their experiences with ALS and to urge the FDA to work with them to overcome some of the obstacles faced in ALS research, clinical trials and standards of care.
Categories: Clinical Trials, Research News, Treatments
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Tags: a diverse group of ALS voices — patients, ALS, ALS clinical trials, ALS community, ALS cure, ALS medical care, ALS research, ALS research funding, ALS survivor Robert Anderson, ALS treatments, amyotrophic lateral sclerosis, Because of the relentless effects of ALS, Bob Stehlin, clinical trials and standards of care., Dr. Jonathan Glass, families, fast-track trials ALS, FDA, FDA ALS, Food and Drug Administration, Lou Gehrig's disease, MDA Senior Vice President of Advocacy Annie Kennedy, MDA/ALS Center of Hope in Philadelphia, MDA/ALS Clinic at Methodist Neurological Institute in Houston, Muscular Dystrophy Association MDA, organizations and the community — came together to speak about their experiences with ALS and to urge the FDA to work with them to overcome some of the obstacles faced in ALS research, PALS, RASCALS Foundation, Robert A. Stehlin Campaign for ALS, Sara M. Feldman, St.Louis RASCALS ALS Lou Gehrig's Disease amotrophic lateral sclerosis, Stan Appel, Steven M. Derks
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Posted by Site Administrator on January 15, 2013
“Some may look at recent failures and be discouraged,” wrote Richard Bedlack of the Duke ALS Clinic in Durham, North Carolina, in an e-mail to Alzforum. Thanks to advances in genetics and biomarkers, and a list of potential target pathways, “I think this is a time of unprecedented hope and excitement in ALS research”
Categories: Clinical Trials, Research News, Treatments
| Tags: ALS, ALS clinical trials, ALS community, ALS Functional Rating Scale (ALSFRS), ALS Phase 3 studies, ALS research, ALS research funding, ALS sodium chlorite, ALS TDI, ALS Therapy Development Institute, ALS treatments, amyotrophic lateral sclerosis, Angela Genge, Annual Symposium on Amyotrophic Lateral Sclerosis/Motor Neuron Disease, antisense oligonucleotide therapy ALS, astrocyte excitatory amino acid transporter 2, Benjamin Brooks, Biogen Idec, biomarkers ALS, Bob Stehlin, ceftriaxone, CK-2017357, cytochrome P450 1A2, Cytokinetics, dexpramipexole, Dr. Timothy Miller, Duke ALS Clinic Durham, Emory University Atlanta, Evan Snyder, FDA, fingolimod, Food and Drug Administration, Forbes Norris MDA/ALS Research Center, genetics ALS, Gilenya, immune-system drugs ALS, Inc., ISIS 333611, Isis Pharmaceuticals, Jeremy Shefner, Jonathan Glass, Les Turner ALS Foundation, Lou Gehrig's disease, Massachusetts General Hospital, Merit Cudkowicz, mitochondrial modulator, Montréal Neurological Institute and Hospital, mutant human superoxide dismutase 1, mutant superoxide dismutase 1, Neil Cashman, Neuralstem Inc, Neuraltus, North Carolina, Northeast ALS Consortium, Novartis, NP001, olesoxime, oligonucleotide, oligonucleotide ALS, oligonucleotide via intrathecal infusion, PALS, Phase III trial ALS, Pitié-Salpêtrière Hospital, RASCALS Foundation, Richard Bedlack, riluzole, Robert A. Stehlin Campaign for ALS, Robert Brown, Robert Miller, Sanford-Burnham Medical Research Institute, St.Louis RASCALS ALS Lou Gehrig's Disease amotrophic lateral sclerosis, State University of New York Upstate Medical University, stem cell trial ALS, Steven Perrin, Susanna Benn, synaptic glutamate, target pathways ALS, Tim Miller, Timothée Lenglet, Tirasemtiv, troponin ALS, University of British Columbia, University of Massachusetts Medical School Worcester, University of North Carolina School of Medicine, Washington University St. Louis, Wendy Abrams, Yang Teng, Yang Teng of Brigham and Women’s Hospital
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Posted by Site Administrator on January 13, 2013
ST. LOUIS, Missouri, January 12, 2013 — The Robert A. Stehlin Campaign for ALS (R.A.S.C.A.L.S.) presented their annual Winged Warrior award to Julie Tristan, anchor-reporter for KSDK’s Show Me St. Louis.
The presentation was made at the RASCALS’ recent Trivia Night, for which Julie has been the Master of Ceremonies since the inaugural event in [...]
Categories: 501(c)(3) Non-Profit, Caretakers, RASCALS Foundation News, Technology, Treatments
| Tags: 501(c)(3) ALS charity, ALS, ALS Awareness Month, ALS charity, ALS community, ALS cure, ALS diagnosis, ALS diagnostics, ALS donations, ALS funding, ALS medical care, ALS research, ALS research funding, ALS treatments, amyotrophic lateral sclerosis, Bob Stehlin, breakthrough, FDA, Lou Gehrig's disease, PALS, RASCALS Foundation, Robert A. Stehlin Campaign for ALS, St.Louis RASCALS ALS Lou Gehrig's Disease amotrophic lateral sclerosis, stem cells
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Posted by Site Administrator on December 10, 2012
While some progress has been made in the treatment of ALS, combination therapies with drugs that target other pathways, alongside stem cell technology, are sorely needed
Categories: Clinical Trials, Research News, Treatments
| Tags: 20th International Symposium on ALS/MND, 501(c)(3) ALS charity, AAD 2004, Adult stem cells, ALS, ALS community, ALS medical care, ALS research, ALS treatments, ALSFRS-R, AmKor Pharma, amyotrophic lateral sclerosis, anti-inflammatory effects ALS, antioxidative effects ALS, Arimoclomol, Aß plaque, Bensimon, Biogen Idec, Biorex, Bob Stehlin, Brainstorm, BrainStorm Cell Therapeutics, Cell replacement therapies, dexpramipexole, dopamine receptor, Edaravone, Edaravone IV injection, EMPOWER, fast-track status, FDA, FDA fast-track designation, GNDF-producing adult stem cell therapy, GNT Pharma, Hadassah Medical Center, Hadassah Medical Center Israel, hydroxylamine derivative, inhibition and reduction of beta-amyloid (Aß) peptide levels, Knopp Biosciences, lipoperoxide 15-HPETE, Lou Gehrig's disease, Mitsubishi Tanabe Pharma, NCT01281189, NCT01492686, Neuralstem, neuroprotection, NSI 566RSC, NurOwn, Orphazyme ApS, PALS, Phase I trial, Phase II clinical trial, Phase III trial, PNA Center for Neurological Research, pramipexole, Radicut, RASCALS Foundation, Revised ALS Functional Rating Scale, Rilutek, riluzole, Robert A. Stehlin Campaign for ALS, Sanofi, SOD1, Spinal Cord Delivery Platform and Floating Cannula, St.Louis RASCALS ALS Lou Gehrig's Disease amotrophic lateral sclerosis, stem cells, Synthetic Biologics, TCA Cellular Therapy, Tel Aviv University, University of Miami
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Posted by Site Administrator on May 20, 2012
There are three classifications of ALS; sporadic, familial, and Guamanian. However there is a rare form called “juvemile ALS.”
Categories: 501(c)(3) Non-Profit, Caretakers, Research News
| Tags: 501(c)(3) ALS charity, ALS, ALS community, Congress, familial ALS, FDA, forms of ALS, Guamanian ALS, Gwynne Hickman, Iplex, juvenile ALS, Lou Gehrig’s disease, RASCALS Foundation, Robert A. Stehlin Campaign for ALS, Sigma-1 receptors, SOD1 mutation, sporadic ALS, St.Louis RASCALS ALS Lou Gehrig’s Disease amotrophic lateral sclerosis, Stephen Hawking
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Posted by Site Administrator on May 19, 2012
“The whole process with the FDA is broken. And it is all about the process, it’s all about the FDA, it’s all about the administration, instead of being about the people,” she said.
Categories: Caretakers, Treatments
| Tags: 501(c)(3) ALS charity, ALS, ALS community, ALS research, ALS treatments, Congress, Erik Metzler, experimental drug ALS, experimental drug bill ALS, FDA, Gwynne Hickman, Iplex, Lou Gehrig's disease, RASCALS Foundation, Robert A. Stehlin Campaign for ALS, St.Louis RASCALS ALS Lou Gehrig's Disease amotrophic lateral sclerosis
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Posted by Site Administrator on May 11, 2012
The U.S. Food and Drug Administration (FDA) approved the second treatment after a review concluded that the patients showed no adverse effects from their first implantation surgeries.
Categories: Research News, Treatments
| Tags: Alfred Taubman Medical Research Institute, ALS, ALS community, ALS research, amyotrophic lateral sclerosis, Emory University, Eva Feldman MD, FDA, Jonathan Glass MD, Lou Gehrig's disease, Neuralstem, Nick Boulis MD, RASCALS Foundation, Robert A. Stehlin Campaign for ALS, Russell N. DeJong Professor of neurology, St.Louis RASCALS ALS Lou Gehrig's Disease amotrophic lateral sclerosis, stem cells, University of Michigan
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Posted by Site Administrator on February 20, 2012
With regard to the development of an efficacious treatment for ALS, we are still in its infancy. There is much more to be done—and much more quickly than we’ve seen.
Categories: Research News
| Tags: ALS, ALS community, ALS research, ALS TDI, ALS Therapy Development Institute, clinical trial, compassionate access, Director of Neurology Clinical Trials Unit, FDA, fingolimod, Gilenya, Lou Gehrig’s disease, Massachusetts General Hospital, Merit Cudkowicz Director of Neurology Clinical Trials Unit, Merit Cudkowicz M.D., NEALS, Northeast ALS Consortium, off-label, Phase II clinical trial, RASCALS Foundation, Robert A. Stehlin Campaign for ALS, SOD1 mouse model, St.Louis RASCALS ALS Lou Gehrig’s Disease amotrophic lateral sclerosis, Steve Perrin, TDI 132
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Posted by Site Administrator on January 24, 2012
“On one end of the spectrum you have people who are doing, essentially, badly designed uncontrolled human medical experiments for profit. And then at the other end of the spectrum you just have thieves who are preying on the sick and their families.”
Categories: Research News
| Tags: 21st century snake oil, 60 Minutes, ALS, ALS community, ALS research, ALS Therapy Development Institute, amyotrophic lateral sclerosis, cbs 60 minutes, Doug Sipp, Dr. Frank Morales, FDA, International Society for Stem Cell Research, Larry Goldstein, Larry Stowe, Lou Gehrig's disease, Margaret Hamburg, michael martin, Muna Erickson, RASCALS Foundation, reuters jim forsyth, Robert A. Stehlin Campaign for ALS, scott pelley, St.Louis RASCALS ALS Lou Gehrig's Disease amotrophic lateral sclerosis, stem cell clinics, steven watters, Stowe Biotherapy, Stowe Foundation, University of Texas
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