PPMD Community

2014 was a historic year in our community. 2015 promises to be another critical year in Duchenne and we need you to help keep the momentum going! Just look at the ‘to-do’ list:

  • MD-Care Act amendment implementation begins
  • New Drug Applications submissions expected by several companies
  • The FDA has stated publicly that producing draft guidance on Duchenne is a priority for them this year
  • Congress will introduce legislation around the 21st Century Cures Initiative, an effort aimed at bridging the gap between scientific innovation and the delivery of therapies to patients

 

With such a big year, it is more important than ever to get involved.

 

Our Annual Advocacy Conference is one month away. We urge everyone to lend your voice, your story, to our efforts in Washington. You don’t have to travel to Washington to be an effective advocate. 

Ways to Get Involved:

 

1. Attend PPMD's 2015 Advocacy Conference in Washington (February 22-24, 2015)

PPMD's Annual Advocacy Conference, held in the first quarter of each year, is the only officially organized gathering on Capitol Hill for the Duchenne community. Families affected by Duchenne will storm Capitol Hill on February 23rd and 24th to meet with members of Congress and their staffers asking them to focus federal resources on Duchenne.  

First time advocating? Don't be intimidated. Before you meet with your members of Congress, PPMD will provide you with extensive training and support, so you go into your meetings feeling empowered and prepared. 

Learn more about the Advocacy Conference, including registration details and hotel information.

(Note: There is NO registration fee for this conference)

 

2. Add Your Name to Our Packet Drop Off

For patients and families who are unable to make the trip to D.C., make sure your voice is still represented by adding your name to the information packets the advocates will be discussing and leaving at each Congressional office. These packets are incredibly effective tools and we know firsthand, they work.

Patients and Families Unable to Attend: Add your name to our packet drop off. (DEADLINE: Monday, February 16, 2015)

 

3. Sign up for Action Alerts

While advocates are on the Hill participating in meetings in February, we will be asking all those who can't make the conference to send emails and make phone calls to reinforce our message. This can be done with just a few easy clicks or five minutes on the phone. (This is a great option for your friends, relatives, and co-workers who want to support you and your family).

We give you the tools to make it as easy as possible, by providing the call script and email template for you. All you have to do is add your personal story.

Sign up for our Action Alerts to be notified about how and when to contact Congress.

4. Spread the Word

Help spread the word on this initiative. Ask your Facebook friends, your email list, your friends, family, coworkers, classmates, and neighbors - anyone who wants to "Change the Outcome" of Duchenne muscular dystrophy, to come to this page and support our effort.

Just click the 'Share' button below!

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