Quest Magazine

MDA Study Shows Lithium Not Helpful in ALS

An MDA-supported, 10-center trial of more than 100 people with amyotrophic lateral sclerosis (ALS) who took the oral medication lithium carbonate — some in conjunction with the ALS drug riluzole — has shown the drug does not provide benefit for disease progression or survival.

The study also showed that lithium can have concerning side effects, and when taken alone (without riluzole), may actually cause harm.

MDA Awards Two New FSHD Grants

MDA has awarded two grants for research aimed at determining the precise molecular causes of facioscapulohumeral dystrophy (FSHD), and developing therapies for the disease.

MDA and Friends of FSH Research (FFSHR) based in Kirkland, Wash., will jointly fund a two-year, $200,000 grant to Joel Chamberlain, an assistant professor of medical genetics at the University of Washington in Seattle.

Artist's Skills Restored for $50 in Parts

A Los Angeles graffiti artist with ALS was the inspiration behind a low-cost, eye-controlled drawing device called the Eyewriter.  For about $50 in simple components, Tony Quan (aka “Tempt 1”) has been able to resume creating his artwork for the first time in more than six years.

'Hackers and artists' join forces

Quan learned he had ALS in 2003. A well-known graffiti-style artist and social activist, in the 1980s Quan had created a distinctive form of graffiti-type art.

Familial ALS Research Update

The state of research in the familial (inherited) form of ALS was the focus of a special one-hour Webinar presented by the ALS Therapy Development Institute (ALS TDI) on March 25, with reports by CEO & Chief Scientific Officer Steve Perrin.

Familial ALS Research Update

The state of research in the familial (inherited) form of ALS was the focus of a special one-hour Webinar presented by the ALS Therapy Development Institute (ALS TDI) on March 25, with reports by CEO & Chief Scientific Officer Steve Perrin.

ALS Research: Disconnecting the Immune System

Blocking a key molecular pathway that the body uses to amplify an immune response has been found to delay disease onset and extend survival in mice with a disease that mimics human amyotrophic lateral sclerosis (ALS), say researchers at the MDA-supported ALS Therapy Development Institute (ALS TDI) in Cambridge, Mass.

ALS Research: Disconnecting the Immune System

Blocking a key molecular pathway that the body uses to amplify an immune response has been found to delay disease onset and extend survival in mice with a disease that mimics human amyotrophic lateral sclerosis (ALS), say researchers at the MDA-supported ALS Therapy Development Institute (ALS TDI) in Cambridge, Mass.

Tadalafil Trial in Becker MD

Update (Oct. 8, 2012): This story has been updated to reflect that the tadalafil trial in BMD has been slightly revised and is now open. In June 2012, it had temporarily closed to new participants. The investigators say the revised trial design was necessary because they were unable to obtain access to the MRI machine for the time periods that were necessary in the first design.

Gentamicin Trial in DMD Shows Mixed Results

An MDA-supported clinical trial of intravenous gentamicin in children and adolescents with a form of Duchenne muscular dystrophy (DMD) caused by so-called "nonsense" mutations (also called "premature stop codon" mutations) found the drug was safe and that levels of the muscle protein dystrophin increased in some, but not all, participants who received the drug for six months.

Health Care Changes Coming

The newly signed Patient Protection and Affordable Care Act, a dramatic reform of the health care system, contains numerous benefits for families living with neuromuscular disease. 

The legislation, approved this week by both Houses of Congress, has features taking effect over the next several months that have implications for people with disabilities. These include expansion of insurance coverage for children and young adults, a ban on insurers' ability to place lifetime caps on coverage, and passage of a long-term care option known as the CLASS Act.

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