Tuesday, February 4, 2014

Letter to a Senator! YOU can make a difference!

Please copy and email the letter below to Emily_Katz@boxer.senate.gov
Please cc: DMDAction@gmail.com

Dear Senator Boxer,

As your constituent, I am writing to ask that your health staff attend an important briefing this upcoming Friday, February 7, from 10:00am-11:00am in 334 Cannon House Office Building.  The briefing will feature a preview of an upcoming documentary on the lives of boys who suffer from Duchenne Muscular Dystrophy (DMD).  It will also include a brief presentation from a panel of renowned Duchenne researchers and scientists as well as DMD parents on opportunities to accelerate approval for the first-ever approved therapy for DMD using the tools Congress provided the FDA in the Food and Drug Administration Safety and Innovation Act (FDASIA), which was signed into law in 2012.
I am the relative/friend of Noah, boy with Duchenne Muscular Dystrophy, the leading genetic killer of children that affects about one out of every 3,500 boys born in the United States.  Duchenne has a 100 percent fatality rate and there is no approved treatment.  A boy diagnosed with DMD around the age of 5 is expected to experience a loss of muscle strength that leads to confinement to a wheelchair by adolescence and a short life assisted by ventilators.  This progressive deterioration leads to death in the late teens or early twenties.
Congress granted the FDA special authorities to accelerate approval of promising treatments for diseases just like DMD that are rare, orphan and fatal.  We face a pivotal moment where a decision could determine whether our child is part of the last generation to die from DMD or among the first generation to live. 
I know there are many demands on your time and on your staff’s time, but I am hoping you will be able to make time for this briefing to help Noah and so many more boys who have no hope unless our government acts to advance promising therapies. I ask that your staff please attend the briefing on Duchenne Muscular Dystrophy on February 7th from 10:00am-11:00am in 334 Cannon.  Please let me know if you will be able to attend by responding toDMDaction@gmail.com.