Tag Archives: fightsma

FightSMA Hails Reintroduction of National Pediatric Research Network Act (NPRNA) in the U.S. Senate

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An international nonprofit leading the fight against Spinal Muscular Atrophy is asking for help in winning approval of the NPRNA in the U.S. Senate.

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FDA Week: Pediatric Rare Disease Group Works To Advance Clinical Research Bill

FDA Week, a Washington, D.C. newsletter, provides coverage of the National Pediatric Research Network Act, a bill designed to help speed a cure for a number of diseases that is backed by FightSMA.
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FightSMA Announces Introduction in the House of Rep. of the National Pediatric Research Network Act (NPRNA)

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A bill to authorize the National Institutes of Health (NIH) to support the creation of up to 20 pediatric research consortia focused on diseases such as spinal muscular atrophy (SMA) was introduced in the U.S. House of Representatives.
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FightSMA Names New Executive Director; Relocates Headquarters to Nation’s Capital

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International nonprofit FightSMA is naming a new executive director and moving its headquarters from Richmond, Virginia to Washington D.C.
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Spinal Muscular Atrophy Experts Answering Questions Online on May 5, 2011

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The 2011 FightSMA Annual Conference, the Good Fight, is underway at the L’Enfant Plaza Hotel this week, and spinal muscular atrophy experts are gearing up to participate in a one-of-a-kind webcast.
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FightSMA Marks 20th Birthday with New Home on the Web

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Recognizing the need for information on spinal muscular atrophy (SMA) FightSMA, an international nonprofit organization dedicated to finding a cure for SMA, is announcing the launch of its all new website, http://www.fightsma.org.
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2009 Fight SMA Conference a Success

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Another Big Year for Fight SMA’s Annual Spinal Muscular Atrophy Conference (Richmond, VA) — The 2009 version of “The Good Fight”, Fight SMA’s Annual Spinal Muscular Atrophy Conference, wrapped up on Tuesday, April 28, and it was another successful year!  Here are a few of the highlights: 20 researchers and two additional graduate students from […]

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Spinal Muscular Atrophy Nonprofit FightSMA Offers Free Conference Webcast

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Traveling with a sick child is always difficult, even when the trip in question involves learning more about the child’s illness. That difficulty has only been amplified by the current state of the economy. For that reason, Fight SMA (http://www.fightsma.org) is providing a free live webcast of two seminars from this year’s Family and Friends Annual Spinal Muscular Atrophy Conference in Washington D.C.

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