To view this email online, go to http://www.parentprojectmd.org/site/PageNavigato/end_duchenne_enews_september10     One Day. One Team. One Voice. Coach To Cure MD 2010 - September 2010 PERSON of the MONTH Brad Todd is a father, an uncle, an advocate of this community, and the creator of Coach To Cure MD. Thanks to Brad's idea that college football coaches could educate and inspire the nation to care about boys with Duchenne, Coach To Cure MD has raised $500,000 to date. Celebrate Coach To Cure MD on September 25 with your friends and family, and get to know its creator, Brad Todd. Show Your Spirit! We are days away from Coach To Cure MD and it's time for you to start showing your team spirit! If you are hosting an event, we provide you with everything you need to spread the word about this amazing day. But if you need a little more festiveness or if you are celebrating Coach To Cure MD on a smaller scale, shop our new Coach To Cure Store! Buy Avon for a Cause For the months of September, October, and November, you can buy your favorite Avon products from representative Elizabeth Aponte, and 40% of the proceeds will go to PPMD. Just  click here to start shopping! The code for this promotion is evt3610 and will say PPMD's name on the page. If you have any questions, contact contact Elizabeth  directly.   Stay Plugged In Facebook Twitter RSS YouTube Flickr Summary of Clinical Trial Presentations from PPMD's Annual Connect Conference PPMD's Senior Director of Research and Advocacy, Sharon Hesterlee, has written up a detailed summary of the presentations from this summer's Connect Conference regarding clinical trials - one of our most popular sessions of the Conference. PowerPoint presentations from the presenters are available for download, for these presentations, as well as many other Conference sessions. Visit the complete Connect Conference wrap-up page.      Acceleron Posts FAQs for ACE-031 Acceleron recently posted updated FAQs with regard to ACE-031,an investigational (experimental) drug that is designed to increase muscle size and strength by blocking proteins that slow down muscle growth.  Click here to find answers to questions you may have about ACE-031. NIH Survey forParents of Ataluren Trial Participants The NIH is conducting a survey of parents of participants in the ataluren trials to describe their experiences. They are especially interested in learning about motivations for being involved in the clinical trial, expectations of the trial, the experience of the trial, and relationships between the parents of children involved in the trial, the clinician researchers, and PTC Therapeutics. To participate in this survey, please click here for more information.  Nationwide Children's Hospital Designated Wellstone Center Nationwide Children's Hospital in Columbus, Ohio has been designated a Paul D. Wellstone Muscular Dystrophy Cooperative Research Center by the National Institutes of Health and will receive a $7 million grant. The Wellstone Centers are a result of the 2001 MD-CARE Act. Dr. Jerry Mendell and Dr. Chris Walker will be co-leaders of the new center which will explore and refine therapeutic strategies that have shown promise in animal models of muscular dystrophy.  Your advocacy work continues to levy government funding of  the best hospitals and centers around the country. Learn more about this latest grant and watch an interview with Dr. Mendell. FDA Webinar Wrap Up How does the FDA make its decisions? Who makes the rules for drug development? What special accommodations are made for rare diseases? Parent Project Muscular Dystrophy and Cure Duchenne hosted a two-part live webinar series featuring Dr. David Banks of the FDA Office of Special Health Issues, earlier this summer. Dr. Banks walked us through the general steps required for approving a drug with special emphasis on the implications of the Orphan Drug Act, individual INDS, and expanded access programs.  Download notes compiled from these webinars.   COACH TO CURE MD IS HERE! For weeks we have been talking about Coach to Cure MD and so many of you have gotten off the bench and are ready for game day!  But, we still need the help of the entire community to make this year's event the great success it can be. On September 25, 2010 we will have the eyes and ears of the country. And there are so many simple things you can do to help us raise awareness about Duchenne:    * Host a watch party at your favorite restaurant    * Recruit local high schools to fundraise    * Create an online fundraising page that can be emailed to       friends and family    * Text a donation    * Share our Coach To Cure video on Facebook Visit Coach to Cure MD and see just how easy it is to get involved.  And contact our returning Head Captain, Rachel Poysky, if you have questions. No one can do everything. But everyone can do something. What if all it took was you? One day. One voice. End Duchenne. Watch & share our Coach to Cure video! The Race Is On! Run For Our Sons is in full force this fall with a strong line up of great races. Check out the RFOS website for a full calendar of events, well into 2011. Some of our best races still have spots, but they are filling fast: Walt Disney World Marathon Weekend Save a spot and make your plans now to join us at this great family event in January. We have new incentives, new hotel blocks, and other surprises to make this a magical experience for the whole family. ING New York City Marathon Join us for one of the world's most prestigious marathons. Registration ends 9/9/10. JUST ADDED! Rock 'n' Roll Denver Marathon With a low minimum and a great course, this new addition to our October schedule is made for the adventurous runner! PPMD and RFOS want to congratulate our incredible Disneyland Half Marathon team who spent the Labor Day weekend running through Disneyland and California Adventure! And best of luck to the Johnson family and Patton Middle School in Pennsylvania as they gear up for their local 5K Patton Gives Back. This is another great example of a community coming together for a great cause, and getting local press along the way. Read the article. Your Participation Matters PPMD just recently updated your go-to guide for fundraising, Participation Matters. This document will tell you all the details you need to know to host a successful fundraiser for PPMD, including collecting donations, generating press, and finding the best event for your community. Download and print your copy of this handy guide before your next big event. And thank you...for all that you do for this community to help us end Duchenne! Special thanks to PPMD mom Lori Ware for contributing great fundraising ideas to this year's Participation Matters! New FACES Group - Pacific Northwest PPMD is thrilled to announce the launch of our latest FACES group in the Pacific Northwest. We have had a very active, very passionate group of families and friends in the Pacific Northwest for many years, and it is great to have them coming together under the FACES umbrella. Katherine Reynoldson is the US coordinator and Vee Lail is helping to bring our friends from Canada to the table. The first official meeting will take place in November, but the team has already started working together. In July, the Reynoldsons, with help from the Twede and Burke families, hosted  Comic Relief which raised over $25,000. On September 18, the Zenobios and Hesters will co-host Harvest the Dream, a dinner and auction event. Help us welcome this new FACES group. Click here to learn more about the FACES program. Understanding Molecular Diagnosis in Duchenne Grasping molecular diagnosis - which means the same as genetic testing - can be confusing and difficult to translate into practical terms. PPMD's Senior Director of Education and Outreach, Holly Peay, has written a summary of an article published earlier this year by a panel of Duchenne experts. These "best practice" guidelines will help you understand what your genetics expert has been told so that you can communicate as productively as possible with them. Download now. Muscular Dystrophy: Guide to CareGiving Homewatch CareGivers, a website dedicated to providing excellent home care for a multitude of disorders, interviewed PPMD President and Founder, Pat Furlong regarding muscular dystrophy care in young people. Read the interview.      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: September 18, 2010 Harvest the Dream Auction in Seattle, WA September 25, 2010 Coach to Cure MD - Nationwide October 2, 2010 Rosstoberfest (KS) October 10, 2010 Bank of America Chicago Marathon October 17, 2010 Rock 'n' Roll Denver Marathon & Half Marathon October 31, 2010 Sam's Day (TX) November 7, 2010 ING New York City Marathon December 5, 2010 Las Vegas Marathon & Half Marathon January 6-9, 2011 Walt Disney World Marathon Weekend 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 2009 — All Rights Reserved. 158 Linwood Plaza, Suite 220 Fort Lee, NJ 07024 Help us end Duchenne. Donate today. Forward to a friend. Was this e-mail forwarded to you? 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