As many of you know our family started A Foundation Building Strength, a 501(c) (3), to raise awareness of this genetic disorder, which causes muscle weakness and early death in its most severe form. NM is such a rare disease that there are very limited resources available for funding treatment related research and supporting affected families. Recently, scientists have discovered mutations in 6 different genes as the primary cause of Nemaline Myopathy allowing efforts to be focused on making a positive impact upon those with the disorder. A Foundation Building Strength is actively supporting research grants targeted at the identification of treatments for NM. With contributions from last year’s event, we have already been able to fund our first research grant! We hope to reach such goals this year as well.

-Visit my personal page and the information on the foundation www.buildingstrength.org http://nemalinemyopathy.kintera.org/faf/donorReg/donorPledge.asp?ievent=300462&supId=203584231

So, if you’ve got the cash I fully encourage all of you to consider attending this fantastic event. It’s being hosted at McCrady’s, so you know the food will be spot on.