When questioned following her prepared testimony before the Senate, Director of the National Institute of Neurological Disorders and Stroke (NINDS), Story Landis expressed her opinion regarding the current federal policy on embryonic stem cell research. Dr. Landis said, “we are missing out on possible breakthroughs,” and added that “science works best when scientists can pursue all avenues of research.”

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Dr. Story Landis received her Ph.D. from Harvard University and served on the faculty of Harvard Medical School and Case Western Reserve University School of Medicine. Dr. Landis joined the NINDS in 1995 and became the Director in September of 2003. NINDS established the SMA Project with the goal to “to enable the development of therapeutic candidates for the treatment of SMA.”

The Muscular Dystrophy Association (MDA), a funder of SMA research, has joined with France’s The Association Française contre les Myopathies (AFM), the U.S.’s Parent Project Muscular Dystrophy (PPMD), and the Netherland’s United Parent Project Muscular Dystrophy (UPPMD) to form Duchenne Research Collaborative International (DRCI).

According to the press release, in creating this coalition, these four groups “have made a commitment to cooperate, collaborate and communicate openly in support of projects to accelerate translational research into therapeutic options to treat DMD.” Also, the new DRCI has “a broader vision to serve as a model for collaboration in the battle against neuromuscular diseases by improving access to information about rare conditions, creating strong public/private partnerships and, ultimately, increasing the amount of funding available for disease research.”

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As part of their “First 100 Hours Agenda,” Democrats in the U.S. House of Representative proposed a bill that would allow federal funding of embryonic stem cell research. The bill passed in the House with a vote of 253 to 174 which is less than the two-thirds majority that will be needed to overturn the veto that President Bush promises. First identified in 1981, stem cell research has been the source of much debate. To help make sense of the recent action in Congress, National Public Radio has compiled a condensed timeline of milestones in this debate, including scientific and legislative highlights.

Children’s Hospital of Eastern Ontario (CHEO) and Illumina, Inc. have announced a collaboration to develop molecular diagnostic tests to screen newborn babies for spinal muscular atrophy (SMA). Under the terms of the research agreement, Illumina and CHEO will initially develop assays to screen newborns for SMA utilizing Illumina’s technology.

Dr. Alex MacKenzie, CHEO’s Vice President of Research and co-chair of FightSMA’s Scientific Advisory Board, said “The era of DNA-based newborn screening is beginning, and we look forward to working with Illumina to expedite this transition, tapping the potential of their powerful technologies.”

President and Chief Executive Officer of Illumina, Jay Flatley said, “Our research collaboration with the Children’s Hospital of Eastern Ontario has the potential to expand the screening of newborns so that dangerous inherited diseases can be diagnosed, and one day may be treated before causing permanent harm.”

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