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International ALS/MND News Headlines

In an exciting race to the finish, Kinga Njilas has won Mike and Ike’s Ante Up! contest – donating the $2,500 winnings, in cash and donated products, to the ALS Society of Canada for research into treatments and a cure for ALS.

Guelph resident Njilas, 25, has made it her mission to raise funds and awareness for ALS after learning of her mother’s diagnosis with the disease four years ago. Even after her mother’s passing in January of this year, Njilas continues her fight by remaining a loyal and courageous ambassador for ALS Canada.

PBS has put together an insightful documentary of one man's battle with ALS and his considerations of a dignified suicide. Craig Ewert, 59, is dying, and in his own words says "There is no sensing in trying to deny that fact". Craig's ALS is rapidly deteriorating his body. While Craig is "not tired of living", Craig is "tired of the disease".

After brainstorming a bunch of ideas to help raise funds, Derek Walton has decided skydiving is the way to go.
His Jump for PALS (People with ALS) will take place on Aug. 22 at Skydive Toronto in Innisfil.

"The skydive is for two purposes. One, to raise awareness for ALS and two, to raise funds for research through my own foundation at Sunnybrook Hospital, which is the closest ALS Clinic."

Four of Elizabeth Berry's paintings will be featured on the ALS Society of Canada's new cards to promote awareness of the fatal neurodegenerative disease also known as Lou Gehrig's disease. The internationally known Toronto artist's paintings feature cornflowers, the ALS Society of Canada's official emblem.

Our fearless moderator has made the news once again. Take a moment to read the Brampton Guardian's profile of Al Pettit.

The fight against ALS is far from over for Orangeville resident Al Pettit (our fearless moderator). In 2003, 59-year-old retired firefighter was officially diagnosed with amyotrophic lateral sclerosis, an incurable neurogenerative disease that causes progressive paralyzation.

An Ontario local ALS Charity Golf Tournament to raise money for ALS Research!

A fun filled day including green fees, power cart, driving range, lunch, dinner, draws, prizes, silent acution, and much more...

The Johns Hopkins University researchers have transplanted into damaged spinal cords human nerve stem cells that they say have survived, grown and in some cases connected with the rats own spinal cord cells.

The ALS Society of Canada has won a Silver Mercury Award for their publication titled "Research News" in the 20th Annual International MERCURY 2006/07 Awards competition.

A former WDJX radio personality accused of stealing as much as $150,000, donated to battle a fatal disease, said he was innocent and turned down a plea offer in Jefferson Circuit Court January 20th, 2007.

A team of scientists and lawyers warn in the journal Neurology that class-action lawsuits may significantly slow or halt science's ability to establish links between neurological illness and environmental factors produced by industry,

ALSforums wishes everyone happy holidays and a happy new year. In our inaugural year we've amassed a very friendly community of people that help one another and offer support to new members. We'd like to thank all of our current members, and welcome all new members in 2007 - we eagerly await your visits!

Fraudulent Egg Harbor City doctor, Charlene C. DeMarco, 44, apparently administered stem cell injections to patients, defrauding them of large sums of money.

In addition to defrauding Roger Parker of Simpson, Los Angeles, the doctor asked for the Parker's friends who had ALS to also contact DeMarco.

TGen scientists working with the Muscular Dystrophy Association identified more than fifty genetic abnormalities in people with Amyotrophic Lateral Sclerosis.

In a focused drug discovery effort funded by TREAT ALS, proprietary stem cells and gene changing technologies are to be combined in a search for targets for potential therapies for ALS.

David Koren's uncle is living with ALS. Inspired by his uncle's determination and dedication to life he composed a song titled All Living Souls.

A growth factor known to be important for the survival of many types of cells stimulates rapid extension of corticospinal motor neurons – critical brain cells that connect the cerebral cortex with the spinal cord and that die in motor neuron diseases like amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease).

Fundamental theories regarding consciousness, emotion and quality of life in sufferers of paralysis from Amyotrophic Lateral Sclerosis (Lou Gehrig's disease) are being challenged based on new research on brain-computer interaction.

The study appears in the latest issue of Psychophysiology. The article reviews the usefulness of currently available brain-computer-interfaces (BCI), which use brain activity to communicate through external devices, such as computers.

Avicena announced that patient enrollment for the first stage of its Phase II ALS clinical trial has been completed by the trial's lead investigator, Paul H. Gordon, M.D., of the Eleanor and Lou Gehrig MDA/ALS Research Center at Columbia University in New York.

A new gene therapy tested at Rush University Medical Center reduced Parkinson's disease symptoms by a remarkable 40 percent, researchers announced October 10th, 2006.

An article published in the September 29th journal titled Science confirms a long suspected link between Lou Gehrig's disease (ALS) and frontotemporal dementia (FTD).

The international team led by the Penn scientist is the first to identify the key protein for ALS and the most common type seen in FTD.

The Institute at Oregon State University has discovered a new technique allowing researchers to watch, study and accurately measure key oxidants in animal cells. This is an important breakthrough that will dramatically speed research for Lou Gehrig's Disease.

Augie Nieto, the man responsible for building a $550 million dollar company called Life Fitness was diagnosed with ALS last year. Augie now aims to raise over $12 million dollars for ALS research on behalf of the Muscular Dystrophy association.

When Elizabeth Lee Hallam was born on Sept. 29, 2003, she was a textbook example of the perfect baby. But by 8 months of age, she was battling a fatal genetic disease her family had never heard of (spinal muscular atrophy). Despite the grave circumstances of her disease, Elizabeth is doing tremendoulsly well under a new therapy.

The ALS Association is funding a continued line of investigation that will build on new evidence that an aspect of inflammation may actually help rather than harm in the progression of ALS.

Denise Figlewicz, PhD, will join the ALS Society of Canada on September 5, 2006 as Director of Research. The position of Director of Research is a newly created position for ALS Canada. Dr. Figlewicz’s research career has focused on mammalian nervous system development and pathology, specifically molecular genetic and cell approaches to investigate neuromuscular diseases such as ALS. She has been involved in the ALS research field since the 1980s.

A Cape Town couple were accused of exploiting desperate patients by providing them with ampoules containing cord stem-cells from a registered laboratory. The couples clients were from across the world and suffered from neurological degenerative diseases such as multiple sclerosis, amyotrophic lateral sclerosis and cerebral palsy.

Saturday, September 16th, 2006 at 4:00pm in Nokesville, Virginia that ALS Association will be having a charity benefit, BBQ and silent auction in support of ALS Research.

Toronto-based Amorfix Life is joining the American-based Biogen of Cambridge, Massacheusettes and includes options to license the worldwide rights to Amorfix's technology. Amorfix develops and commercializes therapeutic treatments for Lou Gehrig's Disease (Amyotrophic Lateral Sclerosis).

Isis drug researchers have designed and tested a new molecular theraphy in animals that they hope will soon be a major breakthrough for ALS patients.

Researchers at the Center for Neurologic Study in Cleveland say that a buildup of toxic mutant proteins is what causes many degenerative neurologic diseases such as motor neuron disease (MND) and amyotrophic lateral sclerosis (ALS).

Inspired by the unfortunate death of Tom Watson's long-time caddy Bruce Edwards who died of ALS, golfers can now support the fight against ALS by purchasing a hotdog at the end of nine holes.

Boston - Red Sox pitcher Mike Timlin returns to Hopkinton High School tomorrow morning as honorary guest for a charity race benefiting research into amyotrophic lateral sclerosis, which took his mother Sharon’s life four years ago.

Researchers at the San Francisco VA Medical Center have identified the mechanism by which minocycline, a medication currently being studied for the treatment of neurodegenerative diseases including Parkinson's disease and Huntington's disease, protects brain and nerve cells from damage.

Experts are describing this latest research discovery as a momentous advance. Scientists have used embryonic stem cells to form new, functional nerve cell connections in formerly paralyzed mice. The outcome was that the paralyzed mice regained restored limb movement.

In a dramatic display of stem cells' potential for healing, a team of Johns Hopkins scientists reports that they've engineered new, completed, fully-working motor neuron circuits -- neurons stretching from spinal cord to target muscles -- in paralyzed adult animals.

Researchers at Japan's governmental research body Riken have succeeded in selectively converting ES cells into neural tissue by using human amniotic membrane.

The method to develop neural tissues without using cells taken from other animals, such as mice or cows, will enhance the safety of the derived tissues, taking the realization of regenerative medicine a step closer to reality.

Borsellino died Saturday, May 27th after battling ALS for over a year and a half.

ALS stole the fast talking New Yorker’s speech and his muscle control, but incredibly, Borsellino kept writing his Des Moines Register column until three weeks before his death.

The Columbia-based lab will seek to develop human cell based ALS assays and use stemcell derived motor neurons to screen drug candidates for ALS and spinal muscular atrophy in the hopes of find treatments for those suffering from motoron neuron diseases such as ALS.

Claire Tow and family have donated $15 million to match a grant to Columbia University Medical School to study motor neurons and motor neuron disease - the reseearch is intended to solve the mystery of ALS.

Our friends at the Robert Packard Center for ALS Research at Johns Hopkins will undertake a gene search for sporadic ALS. Sporadic, or Typical ALS, accounts for approximately 90% of individuals living with ALS, whereas familial ALS, the form of ALS most researched, affects 10% of people with ALS.

Avicena said its potential drug for Lou Gehrig's disease (ALS-02) failed in trials to improve muscle strength and function. The drug did show a trend of reduced mortality. Further study will be needed with the hopes for eventual FDA approval should continued studies show treatment success.

In a state with no ALS Association chapter and very few resources for patients and their families, Tammy Brown is leading the fight for an increase in governmental aid and medical research. Brown and her family are headed to Washington, DC to take part in the 2006 National ALS Advocacy Day and Public Policy Conference.

Firefighters help strike out Muscular Dystrophy with their 2nd annual Bowl-a-Thon this upcoming Saturday, June 10th, 2006.

The event takes place at Brunswick Bowl on Satnfield Road in Mississauga, Ontario.

Chapter will host the Strike Out! ALS Celebrity Benefit on Thursday, May 11th, 2006, from 5:30 until 8:30 PM at the Terrace Club at Jacobs Field.

The event includes cocktails, dinner and a silent auction. The event is co-hosted by WKYC Health Reporter Monica Robins and Cleveland personalities Brad Sussman and Larry Morrow.

Marischal (Mop) Astwood, former PHC Zebras and Bermuda international footballer was diagnosed with ALS last February (2005). “All I can encourage others is not to take anything for granted as I have now found out,” a wheelchair confined Astwood told The Royal Gazette.

A diet high in polyunsaturated fat and vitamin E may reduce the risk of developing amyotrohpic lateral sclerosis by fifty percent. Polyunsaturated fats including Omega 3, found in some vegetable oils, and omega 6, found in fish and leafy green vegetables.

The study included only 132 patients - further research can be expected.

A recent study using a mouse model by the Mount Sinai School of Medicine has shown that a high-caloric ketogenic diet may slow and/or prevent the progression of amyotrophic lateral sclerosis. The study appeared in the April 3rd, 2006 issue of BMC Neuroscience.

CytRx Corporation announced that Steven Kriegsman, President and CEO of CytRx, is scheduled to present at the UBS Global Pharmaceuticals Conference on Monday, April 24, 2006 at 3:00 PM EST.

The website will be available in audio live starting at 3:00PM EST; to find out more please read the entire article.

CytRx has completed its enrollment in Phase IIa clinical trial for ALS; the data from this trial is expected to be released in the third quarter of 2006.

"We are exceptionally pleased to complete enrollment so rapidly, which we believe indicates favorable interest from the ALS community for arimoclomol as a potential treatment for this life-threatening disease," said Steven Kriegsman (CEO) of CytRx.

Driving 4 Life is pleased to announce that PGA TOUR professional and local celebrity Brad Faxon will join a star studded line up of talent to kick off the Driving 4 Life Quest for a Cure Open at the Tournament Players Club of Boston in Norton, Massachusetts this May 8th. All Driving 4 Life charity golf tournaments benefit ALS TDF, a local nonprofit research center seeking a treatment and cure for ALS.

One of the final requests Steve Baker made to his family before his death was that they start a foundation to battle Amyotrophic Lateral Sclerosis, or ALS (also known as Lou Gehrig's disease), the disease that claimed his life in October 2004.

In January 2006, Steve Baker's family officially started the Steve Baker Foundation for ALS, a nonprofit agency aimed at providing funds for ALS research and helping those suffering from Lou Gehrig's disease.

Barton Schwieger of Waterloo Iowa has passed away from Amyotrophic Lateral Sclerosis at the age of 64. Barton served as a senator in the 1970's and was diagnosed with Lou Gehrig's disease in 1998.

The Forbes Norris ALS Research Center has started a new research trial and asks for ALS patients to submit a blood sample for genetic testing.

The study will collect 250 blood samples from ALS patients in a three month time period.

If you are willing to participate please read this article for contact information.

The CYBL to raise funds for ALS research at the Cecil B. Day Neuromuscular Research Center at Massachusetts General Hospital. The event takes place March 18th, from 8AM to 8PM.

Vitalstim can be an effective treatment to help people suffering from difficulty swallowing (Dysphagia). Vitalstim is offered at a number of hospitals in the UK, North America and abroad.

Based on findings in rats, researchers believe an antisense drug has potential to be an effective treatment for some familial types of ALS.

"The potential of this therapeutic approach is very exciting for ALS patients carrying the SOD1 mutation," said Lucie Bruijn, Ph.D., ALSA science director and vice president.

Cognitive impairment (memory loss) appears to be common in ALS patients reports a study of 40 patients with amyotrophic lateral sclerosis (ALS).

"Even though ALS was previously thought to affect only the motor system, physicians are increasingly recognizing that the symptoms are much broader", writes Michael J. Strong, M.D.

Exactly how ALS - Lou Gehrig's disease - damages motor neurons is one of medical science's lingering mysteries. At least six mishaps within cells appear to contribute to the death of the nerves that enable muscle movement, but nothing stands out as the key problem.

Researchers have found that a common anticonvulsant drug helps slow the progression of dementia. This research may have positive results for people affect by ALS.

There might be hope for people affected with Amyotrophic Lateral Sclerosis (Lou Gehrig's disease) because of two well studied drugs, thalidomide and its derivative lenalidomide.

Phase II clinical trial of a molecule drug candidate arimoclomol for the treatment of amyotrophic lateral sclerosis.

Harry Browne (born June 17, 1933), author and long-time spokesman for libertarian causes, died March 1st, 2006 of Lou Gehrig's disease. Harry Browne was a supporter of the Libertarian Party and the DownsizeDC Foundation.

There is no cure for Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig's disease, and until now, there has been no diagnosis for it either.

Scientists at Mount Sinai School of Medicine have identified the first biomarkers for amyotrophic lateral sclerosis (ALS). These findings pave the way for a reliable test that will identify ALS sufferers at an earlier stage of the disease, and give more chances to companies developing disease-modifying drugs.

The primary aim of the drug trial is to determine whether treatment with thalidomide is safe and well tolerated in conjunction with riluzole and whether patients with ALS can tolerate daily doses of up to 400 mg.