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How You Can Help with the Upcoming Ad Comm for Eteplirsen – Every Single Voice Matters!

We are just a few short weeks from the FDA Advisory Committee Meeting for eteplirsen on April 25th. PPMD is part of a united coalition of Duchenne organizations (MakeDuchenneHistory Coalition) working together to ensure we make the largest possible impact on the advisory committee and the FDA.

Duchenne experts have weighed in too sending a letter to the FDA urging the approval of this critical foundational therapy. 

 

The momentum is tremendous but we need YOU to take action leading up to the big day. Here are two ways you can help:

 

1) Attend the AdComm in Person - Fill a seat and help pack the room!

The Ad Comm will take place at the College Park Marriott Hotel & Conference Center - 3501 University Blvd E, Hyattsville, Maryland 20783. This room is bigger than the one originally planned for at FDA in January so we want to ensure we have as many community members as possible present.

 

Helpful Reminders:

  • If you are too far from the location to come in for the day, travel and hotel is being provided to the Duchenne Community by Jett Foundation (you can indicate the need for assistance when you register)
  • Hospital beds, shower chairs, hoyer lifts will be provided if needed
  • Childcare will be provided by Camp Promise
  • April 24th Sunday Night Reception hosted by PPMD
  • Breakfast and lunch provided on April 25th
  • Monday April 25th after party and reception
  • We need to know if you are attending! Please register with the #MakeDuchenneHistory Coalition and let us know you are coming!

 

We hope local families can also make the trip considering your proximity to the event! Hopefully you received our local push email. You must still register and let us know you are coming.

 

Connect with Others Who Are Attending:

Join our event page on Facebook to connect with other families who will be attending the Ad Comm. 

 

2) Send in a Written Testimony

Submitting a written testimony to the committee is a great way to advocate and have your voice heard. Along with attending the big day, this is something EVERYONE can do. Last time we had just over 100 testimonies – we need much more this time around. If you submitted one last time you must resubmit again this time. Here is additional background about written testimonies.

 

Written testimonies must be submitted on or before April 11th.  Please consider sending in your personal story.

 

Check out this recent webinar on how you can participate:

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Comment by Gail D. McVicker on April 14, 2016 at 11:54am

Is there a way to explain, very clearly in layman's fashion, what the specific tools resources and authorities are that we are urging the FDA to use? (and maybe that they haven't been using or might not use?). How long they have been in effect? how do we make this understandable to the local population?  Just wondered if all of this information is in one place.

How do I get a copy of the media kit -- is it online or can it be sent to me?

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