Running the Boston Marathon for Narcolepsy
InÂ its recentÂ press release Massachusetts-based Wake Up Narcolepsy (WUN) -Â a nonprofit whose mission isÂ to raise both public awarenessÂ andÂ funds for research and education -Â announced that for theÂ first time ever narcolepsy was represented at the 114th Boston Marathon! The race took place on April 19th, 2010. The 4 runners, including Julie Flygare (see related article), and aÂ parent whose child was diagnosed with narcolepsy two years ago, worked to raise over $30,000 for WUN from sponsors solicited in the weeks and months leading up to the race.
“We extendÂ our sincerest congratulations, admiration and thanks to WUN Director Kevin Cosgrove and each of the marathon participants,” says Eveline Honig, MD, Narcolepsy Network’s Executive Director. “These individuals’Â efforts are a breath of fresh air in a climate whereÂ essential narcolepsy research projects are stalled due to lack of funding stemming from a weak economy and cuts in the federal research budget.”
It’s been over ten years since theÂ identification ofÂ Â hypocretin cells, a major breakthrough in the discovery that narcolepsy is caused by the destruction of these brain cells.Â However, this finding applies only to people whose narcolepsy symptoms include clear-cut cataplexy. For up to half of people diagnosed with narcolepsy, who do not have cataplexy and have not lost hypocretin cells. researchers still have no clues as to the cause.
Says Honig, “Several of Narcolepsy Network’s members and their families have takenÂ theÂ shortage ofÂ research dollars into their own hands byÂ holdingÂ local fund-raising events for the benefit of Narcolepsy Network.”Â Often, these events draw on a personal interest such as swimming or running but could also feature comedy acts, concerts or other entertainment. “I hope others will be inspired by these individuals to consider an event in their communities. ”
View Wake Up Narcolepsy’s Press Release.
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Date Created: May 9th, 2010
Last Updated: August 29th, 2010