Biomarker for ALS Disease Progression Identified by the Teams at University of Miami and Flinders University!

Read the Neurology journal article:

Please refer to the following press releases for more information:

Brain Medicine

Dr. Benatar presents promising phase II trial results of Arimoclomol in SOD1 ALS

Please refer to links below for further detail:

University of Miami Miller School of Medicine Press Release

http://www.alsa.org/news/media/press-releases/trial-of-arimoclomol-120916.html

http://orphazyme.com/index.php/news/news-releases/73-phase-ii-arimoclomol-als-sod1

Dr. Benatar & ALSA invite you to join a webinar on ‘The CReATe Consortium’: Wednesday, July 22nd at 4:00 PM.

Dr. Benatar is hosting a webinar in partnership with ALSA to discuss The CReATe Consortium research program. Patients, families, and friends are all invited to join!

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NIH Funds ALS Research Consortium Headed by UM Neurologist

Dr. Michael Benatar awarded $6.24 Million NIH Grant for Creation of Rare Diseases Clinical Research Consortium

NIH Funds ALS Research Consortium Headed by UM Neurologist

From left are Claes Wahlestedt, M.D., Ph.D., Jacob McCauley, Ph.D., Michael Benatar, M.D., Ph.D., Rebecca Schüle, M.D., Zane Zeier, Ph.D., Stephan Züchner, M.D., Ph.D., and Evadnie Rampersaud, Ph.D.

MIAMI, FL –The National Center for Advancing Translational Sciences and the National Institute of Neurological Disorders and Stroke have granted a $6.24 million cooperative agreement award to Dr. Michael Benatar for the establishment of a Rare Diseases Clinical Research Consortium. The consortium, to be called CReATe (Clinical Research in ALS and related disorders for Therapeutic development) will study amyotrophic lateral sclerosis (ALS) and other related rare diseases.

This unique collaborative effort will attempt to elucidate the relationship between phenotype and genotype in ALS and related disorders, search for new genetic causes of disease, identify genetic modifiers, and the development of biomarkers that may aid in therapy development.

For more details, please view the articles below.

 

Udonis Haslem and Jeff Fogel

305 Films & ALS Recovery Fund Partner to Make ALS Movie “Who is Lou Gehrig?”

Udonis Haslem and Jeff Fogel

“Who is Lou Gehrig?” an inspiring film about ALS and starring Miami Heat forward, Udonis Haslem has launched a Kickstarter campaign to raise funds and needs your help to share Jeff Fogel’s personal story.

MIAMI, FL – 305 Films and the ALS Recovery Fund have teamed up to produce the short film “Who is Lou Gehrig?” taking audiences into the mind of Jeff Fogel; an active Miami native who was diagnosed with ALS three years ago. The movie follows Fogel’s life with ALS but takes a unique approach by intertwining reality with Fogel’s positive outlook and elaborate imagination as he goes about his daily routine.

The concept for the film was developed by Gil Green, a director with 305 Films and Fogel’s friend of more than 20 years. Gil Green was inspired by how his friend has handled his diagnosis and by watching him continue to live his life despite his increasing physical limitations. Miami Heat Forward, Udonis Haslem has also become involved with the project and will be making his acting debut when Fogel envisions himself not only coaching his girl’s basketball team, but the Miami Heat.

305 Films and the ALS Recovery Fund are raising money for the production of the film, with all additional funds going to the ALS Recovery Fund. Gil Green hopes Jeff Fogel’s story “will inspire people faced with any obstacle in life.” The film is estimated to be released in December 2014. To get involved, or to hear more about the production of the film from Green and Fogel, please visit the links below.

Arimoclomol

Enrollment closed for the Phase II/III Trial of Arimoclomol in SOD1+ Familial ALS

MIAMI, FL – The Principal Investigator at the University of Miami announced that enrollment has closed for the FDA-sponsored phase II/III randomized, double-blind, placebo-controlled trial of the experimental drug Arimoclomol, in SOD1+ familial ALS. This administrative decision to close enrollment at the end of the phase II component was made in consultation with the trial’s steering committee. The decision was based on the relatively slow recruitment rate and the resulting need to raise additional funds to support the continued development of Arimoclomol in ALS. Trial data have not been analyzed, and results are not available. All investigators remain blinded to treatment allocation.

Patients who have consented by June 30, 2014 to participate in the trial will have the opportunity to enroll if they are eligible. All new enrollees as well as patients already enrolled in the trial will remain on study drug through the originally planned 12 months of follow-up. Once follow-up has been completed for all enrolled patients, investigators will proceed to analyze and publish the phase II trial results. Orphazyme, the company that owns and develops Arimoclomol, has expressed a keen interest to support a phase III clinical trial if the phase II data are promising.

Investigators believe that the decision to close enrollment and to analyze and publish the results of the phase II component of this trial represents the most efficient and expeditious way forward in developing Arimoclomol as a potential therapeutic agent for patients with ALS.

Michael Benatar, M.D., Ph.D.

Miller School ALS Expert Helps Discover New Genetic Causes for Multi-System Degenerative Disorder

Michael Benatar, M.D., Ph.D.

Michael Benatar, M.D., Ph.D.

The Miller School’s Michael Benatar, M.D., Ph.D., associate professor of neurology, was part of an international team of researchers that discovered two new genetic causes of a multi-system degenerative disorder that typically affects the brain, muscle and bone, and of amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease. Published March 3 in the journal Nature, their study sheds light on the underlying biology of ALS and new opportunities for therapeutic development.

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ALS Research and Patient Care at the Miller School Gets $1M Boost

ALS_recovery_find_LogoThe ALS Recovery Fund, a steadfast ally in the fight against ALS, has pledged another $1 million to the Department of Neurology at the University of Miami for its continued ALS research and patient support. The gift will expand upon the Miller School’s existing programs and provide additional resources, including researchers and a dedicated health care professional to coordinate the unification and integration of the ALS Clinical and Research Programs.

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