To view this email online, go to http://www.parentprojectmd.org/site/PageNavigato/end_duchenne_enews_march11     One Voice Summit Wrap Up & A New Website - March 2011 PERSON of the MONTH Being part of a close-knit Irish family, Amy Grafton is the kind of person who always goes out of her way to help a family member. So when her cousin, Stan Duda – a major participant in PPMD's Run For Our Sons program, along with his wife Tracy – talked up PPMD she decided to get involved and help. And because they are Irish and a family of runners, what better way to support our organization than by hosting a St. Patrick's Day inspired 5K? Thus, the Shamrock Shuffle 5K was born. We love to celebrate people who find opportunities to raise awareness in their community. We also like to highlight what they did and how they did, in the hopes that it will inspire you to host an event in your town. Thank you to Amy and her family and Happy St. Patrick's Day! Meet Amy Grafton. Buy From Amazon, Raise Money for Duchenne! Shop year round through Amazon and a percentage of your purchase will be given to PPMD. Click on the Amazon.com link from the PPMD web page. Tell your family, tell your friends, tell your neighbors, tell your co-workers. All you have to do is: 1) Remember to go to the PPMD website. 2) Click the new Amazon link.  3) Shop as usual and raise money for PPMD at the same time! You'll get the same great prices and service while also raising money to fight Duchenne all year! We Moved Parent Project Muscular Dystrophy has moved its New Jersey office. Our new address is: 401 Hackensack Avenue 9th floor Hackensack, NJ 07601 Our phone and fax number remain the same: Phone - 800.714.5437 Fax - 201.944.9987 Stay Plugged In Facebook Twitter RSS  YouTube Flickr PPMD President Named to NORD Board PPMD founder Pat Furlong has been named to the Board of Directors of the National Organization for Rare Disorders (NORD) and the Institute of Medicine's (IOM's) Committee on Pediatric Studies. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. IOM is an independent, nonprofit organization that works outside of government to provide unbiased and authoritative advice to decision makers and the public. Congratulations to Pat on these appointments. To learn more about Pat Furlong,  follow her on her blog. Webinar:  DELOS Study Update Dr Richard Finkel, M.D. (Division of Neurology, Children's Hospital of Philadelphia) presented an update on Duchenne and its current treatment options, and gave an overview of the ongoing phase III study with Idebenone (DELOS Study) for which Dr. Finkel serves as Principal Investigator for North America. If you missed the March 3rd webinar, you can listen online. Just enter the required information. Click here. What We Are Funding You might have noticed some changes on the PPMD website including our most robust research section to date. Featured under Advance Research is a detailed chart of the therapeutics we are funding. From thorough descriptions of the clinical trial process, to an introduction to PPMD's GIFTED program, to updates on what is coming down the therapeutic pipeline, we hope you will find our revamped site to be more user-friendly, more informative, and the kind of resource you can turn to with questions about Duchenne. One Voice Advocacy Summit: Wrap Up & Next Steps On February 14, families, clinicians, researchers, and others impacted by Duchenne gathered in Washington, DC for the One Voice Summit, hosted by Parent Project Muscular Dystrophy.  Held ten years to the day after the landmark MD-CARE Act was first introduced in Congress, participants of the Summit marked the progress achieved during the past decade and began to build a plan of action for the next ten years. Read the rest of the article summarizing the One Voice Advocacy Summit.  Learn more about PPMD's Advocacy Agenda.  Bringing the One Voice Advocacy Summit to You Want to learn more about the Advocacy Conference experience from the parents and supporters who attended? Listen to a great podcast from the Conference and get a real sense of what the experience is like, as well as, some of the goals of our advocacy agenda. Thank you to Ron Chorzewski, an uncle of a young man with Duchenne (Joey) and a first time Advocacy Conference attendee.  And for a panel-by-panel take on the summit from a PPMD parent and advocate who was there, check out Brian Denger's blog. ADVOCACY ALERT: Let Your Voice Be Heard From Home Whether you attended this year's Advocacy Conference or not; whether you have ever advocated for Duchenne or not–We need your help and your voice! Learn how. It's easy, only takes a few minutes, and you can do it from your home or work computer. Don't count on someone else to make a difference. Be that person...for your son and for all of our sons. RUN FOR OUR SONS: News & Events ** Run For Our Sons congratulates PPMD's Chairman of the Board, John Killian on receiving the 2011 Cash Sweat & Tears Award for his dedication and passion for the Run For Our Sons program. John was honored on March 1 at a gala event hosted by Run Walk Ride, the award sponsors, during their annual conference. Pat Furlong presented him the award. Read more. Congratulations John and thank you for all that you do! ** We would also like to spotlight Boston Marathon runner Chris Hancock! A novice marathon runner, Chris began running when his son was diagnosed with Duchenne both to relieve stress and to make him a more healthy and fit father for his family. Here, he shares his story and encouragement to inspire other runners. ** Start spreadin' the news! Join Run For Our Sons at one of the most sought after marathons in the country, if not the world: 2011 ING New York City Marathon. Spots are limited, but we have them and want you and your friends to join us as we pound the streets of NYC and go the distance to end Duchenne. Fill out the survey today. ** Follow us on Twitter! Now you can stay connected to our great Run For Our Sons events on both Facebook and Twitter. Visit the Run For Our Sons website for everything you need to know about our upcoming races, plus great fundraising and training tips. Go Shea Racing! Rising race car driving superstar, Shea Holbrook continues to show her passion and support for the Duchenne community. Please help us congratulate Holbrook who recently announced a partnership with K&N and Lucas Oil for the 2011 Touring Car Season. For those of you who joined us at Walt Disney World in January, you were lucky enough to meet this great young woman. Holbrook has made it her mission, as a professional driver, to raise awareness and funds for the fight to end Duchenne. Congratulations on the partnership Shea, and thank you! Visit Shea Holbrook on Facebook. REGISTRATION IS OPEN: PPMD Connect Conference in Baltimore It's that time of year again! Time to book the family trip to PPMD's Annual Connect Conference. Join us July 7-10  at the Baltimore Marriott Waterfront. A closed scientific workshop will begin on Wednesday, July 6. The Connect conference will begin on Thursday, July 7. We strive to bring you the most informative and comprehensive conference every year. This year, we are particularly excited about the wealth of information to be presented and the expansiveness of the agenda. For details about our hotel room block, Conference registration, Kids Track, and a special event at the National Aquarium in Baltimore, visit our Connect Conference landing page. See you in Baltimore! Coming Soon: Clinic Services Resource for Duchenne We are pleased to announce an exciting resource coming to PPMD through the DuchenneConnect registry this Spring: The Clinical Services Resource. This resource is designed to unite patients, families, and clinicians to improve healthcare together. Allowing both patients and healthcare providers to submit answers is the first step toward improving care together. Anonymous family responses from each clinic will be gathered together and matched with responses from healthcare providers at each clinic. Together, this information will result in a publically available and searchable resource that highlights the services available from clinics across the country. Visit DuchenneConnect.      SAVE THE DATE There are so many opportunities for you to help raise awareness and learn more about Duchenne. Check out these great upcoming events and visit our online calendar: March 11, 2011 Dancing with the Spartans March 19, 2011 Shamrock Shuffle 5K Run-Walk March 26-27, 2011 Racing for a Cure to END Duchenne March 27, 2011 Swing Time Dinner & Dance April 10, 2011 GO! St. Louis Marathon and Half Marathon April 16, 2011 (ELEV8)TION GAIN April 16, 2011 Memphis BrewFest 2011 May 13, 2011 Pour for a Cure May 14, 2011 1st Annual Cooper's Win to End Duchenne May 14, 2011 Kids Dash for Micah's Miracle May 21, 2011 2011 Rhoad Cup June 25, 2011 Rock 'n' Roll Seattle Marathon & Half Marathon June 26, 2011 "Music for Mark" Concert for a Cure June 11-26, 2011 Journey to End Duchenne - El Camino de Santiago July 6-10, 2011 PPMD's Annual Connect Conference July 16, 2011 Shootout for a Cure July 16, 2011 A Walk for Jacob - Searching for a Cure August 20, 2011 Mitchell's Run Thru Rockford September 4, 2011 Disneyland Half Marathon September 18, 2011 Rock 'n' Roll Philadelphia Half Marathon October 9, 2011 Bank of America Chicago Marathon October 9, 2011 Rock 'n' Roll Denver Marathon & 1/2 Marathon November 6, 2011 ING New York City Marathon Don't see your event listed? Contact Ryan Fischer. Did you miss us last month? For an archive of previous newsletters, click here.     Our Mission: To improve the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne muscular dystrophy through research, education, advocacy and compassion. © Parent Project Muscular Dystrophy 2011 — All Rights Reserved. 401 Hackensack Avenue, 9th Floor Hackensack, NJ 07601 Help us end Duchenne. Donate today. Forward to a friend. Was this e-mail forwarded to you? Subscribe today.