PPMD Launches State Captain Advocacy Program

Our incredible community is fighting the war on Duchenne on many fronts. These fronts include funding early science and breakthrough translational research, demanding optimal care for all those diagnosed with Duchenne –and changing public policy. Much of those gains on the battlefield have happened due to our intensive focus on advocacy and passage of the MD-CARE Act, key pieces that helped to change landscape. In every war, you need captains to help coordinate your ground troops. In that spirit, PPMD is excited to launch the PPMD State Captain Advocacy Program.


With the passage of the MD-CARE Act Amendments last year, it is now more important than ever to keep the momentum going for our community. Members of Congress who have supported our agenda in the past must continue to be told why their support means so much and has substantial impact. We have new members in the 114th Congress that will need to be educated about Duchenne and our community’s priorities. The goal, as always, is to create new champions for our cause and grow the existing relationship we have built over the years.


The purpose of the State Captain Program is to have a point of contact in each state working with families to help them create and maintain relationships with their members of Congress. These will be go-to members of our army, helping families navigate how to advocate with members Congress and creating lasting relationships, relationships that will make all the difference to moving us into this brave new era of Duchenne.


As we head into the 2015 Advocacy season starting with the upcoming Advocacy Conference, I am proud to announce the State Captains for PPMD and the Duchenne community. We have piloted the program in 17 states to start.  We plan to have a Captain (or two in large states) in every state possible by the end of 2015. We will keep you updated as we add more. If you want to learn how you can be more involved with your State Captain, to work with them in developing stronger relationships with those who represent you in Washington, simply connect with them through their community profiles below.


Ten hut, Captain roll call: 


JoAnne Powell

Mother of Landon

Batesville, AR

Connect with JoAnne


Austin Miller

Father of Elijah


Connect with Austin


Julie Garcia

Mother of Nick

Sacramento, California

Connect with Julie


Michael Lee

Father of Christopher



Patrick Rownd

Father of Wyatt

Luling, LA

Connect with Patrick


Brian Denger

Father of Matthew and Patrick

Biddeford, ME


Jeff Watkins

Father of Noah

Annapolis, MD

Connect with Jeff


Amanda Becker

Mother of Jack

Newburyport, MA

Connect with Amanda


Drew Malone

Father of Adam

Brandon, MS

Connect with Drew


Robin Taylor

Grandmother of Louie

Omaha, NE

Connect with Robin


Pat Moeschen

Advocate and muscular dystrophy community leader


Connect with Pat


Christine Piacentino

Mother of Jonathan

Rochester, NY



Gail McVicker

Grandmother of Jake and Ryan

Pottsdale, PA

Connect with Gail

Tom Biesecker

Father of Dayton and Blake



Woody Moore

Father of Logan

South Carolina

Anita Bullers

Grandmother of Nicholas

Houston TX

Connect with Anita


Joanne Wechsler

Mother of Adam

Jericho, VT

Connect with Joanne


Lynn Bartels

Mother of Jacob

Graham, Washington

Connect with Lynn

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