Spring Into Exciting Marathons, Ataluren Update - March 2010
PERSON of the MONTH
Teachers are amazing people. We all know that. Sometimes teachers become true superheroes though, by going above and beyond the call of duty for their students. Eileen Jones, joined by members of the faculty at Oak Lawn Community High School, is holding one of the most original fundraisers we've heard of - Dancing with the Spartans. Inspired by and staying true to the format of the hit show Dancing with the Stars, this fundraiser will not only entertain an Illinois community, but educate. Eileen has been working tirelessly to make this fundraiser a huge success and we recognize her and her team for being truly innovative in their approach to fighting Duchenne! Meet Eileen Jones.
Become A Fan of Run For Our Sons Reach out to even more fellow Run For Our Sons teammates on Facebook! PPMD is happy to have launched a new RFOS fan page that, along with the revamped website, will become your guide to everything RFOS.
A Brother’s Love New Jersey high school senior Ryan McKeaney is a star basketball player and doting big brother to 7-year-old Eddie who has Duchenne. Ryan was recently featured in his local paper for his outstanding sportsmanship on and off the court, and the article resulted in increased awareness about Duchenne. Click here to read this great article about an awesome young man.
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Update on ataluren Trials In response to the press release that went out on March 3, 2010 from PTC Therapeutics regarding the ataluren trials, an open conference call was held on March 5 for parents to have their questions answered by PTC. Click here to read notes compiled from this important open conference call. Six Duchenne Funding Organizations Meet in Washington, D.C. The founding members of the Duchenne Research Collaborative Interational (DRCI), which is composed of Association Française contre les Myopathies (AFM), the Muscular Dystrophy Association (MDA), Parent Project Muscular Dystrophy (PPMD) and United Parent Project Muscular Dystrophy (UPPMD), met in Washington D.C. on February 20 along with fellow funding organizations Cure Duchenne and the Foundation to Eradicate Duchenne (FED). The different funding organizations came together to share research strategies and discuss issues of interest to all in the Duchenne community.
BioMarin Company Update BioMarin Pharmaceutical Inc. announced that Hank Fuchs, M.D., Chief Medical Officer of BioMarin, will present a company update at the Cowen and Company 30th Annual Health Care Conference in Boston on Tuesday, March 9, 2010 at 3:00 p.m. ET. If you are Interested in watching this presentation, you may access a live audio webcast of the conference call via the investor section of the BioMarin website. A replay of the call will be archived on the site for one week following the call. BioMarin developed BMN 195, which is currently in Phase I clinical development for the treatment of Duchenne.
Take Action! This year’s advocacy agenda is underway and we need you to reach out to your members of Congress for their support! This year we are asking House and Senate members to support a programmatic funding request within HRSA (PRONOUNCED “HER-SA”) so that the agency can include a focus on primary muscle diseases like Duchenne. By helping educate pre-school teachers, family physicians, clinic workers, and other front-line health providers to understand and recognize the signs of muscle disease like Duchenne, we can dramatically reduce or eliminate the delays in getting a diagnosis. Please click here click here to take action now!
How To Be An Advocate for Your Child PPMD parent Rhiannon Traigle writes about advocating
and how important it is to empower yourself and make a difference for your
child. This touching article gives an honest perspective from a
parent who never gives up and never takes no for an answer.
Spring Into Marathon Season Run For Our Sons is ready for Spring with a new race in the heart of Dixie and the return of a midwest favorite! In April, runners will suit up to participate in the Rock
'n' Roll Country Music Nashville Marathon & Half Marathon. This is the perfect endurance event for the runner or speed walker that loves live country music and the South in April. Join our new RFOS team on April 24.
RFOS will be returning to Cincinnati
Flying Pigs Marathon & Half Marathon on May 2, for the third year in a row. Each year our team at this incredible event has grown and we're hoping to beat last year's fundraising total! Cincinnati rolls out the "pink" carpet and RFOS will be there to raise awareness and enjoy the fun. We hope you'll join us!
For more about these races and other great RFOS events, please visit the newly refreshed Run For Our Sons website.
Racing to End Duchenne PPMD and Shea Racing have teamed up in our mission to end Duchenne. 19 year-old Shea Holbrook, who has two cousins with Duchenne, has generously offered to give 50% of her sponsorship proceeds to PPMD, as well as, help raise awareness for Duchenne. We are excited to partner with Shea Racing and honored to be chosen as their charity! Shea has invited located families in the St. Petersburg, Florida area to attend opening day on March 28, 2010. Learn more about this great rising star and become a fan of Shea Racing on Facebook so you can thank her for her support!
PPMD's 2010 Annual
Connect Conference In addition to bringing you the only comprehensive conference in the U.S. dedicated to Duchenne, we are thrilled to announce a parallel scientific track this year: the Duchenne Therapeutic Development Meeting. Attendees to the Connect Conference, June 24-27 in Denver, will have the opportunity to check out both agendas and map out their day accordingly. We are also excited to announce that you can now make your hotel reservations and receive PPMD's discounted group rate. We will open registration for the conference on March 15, but in the interim check out all of the exciting details of this year's Connect Conference (including a Kid's Track!) and contact PPMD with any questions.
Nutrition Review in Duchenne Good nutrition is of critical importance for the well being of all children, but never more so than when you have a child living with Duchenne. This important study outlines valuable information about good nutrition and supplements, and suggests the need for a dietician as part of your son's care.
SAVE THE DATE A busy 2010 is upon us. Keep your calendar up-to-date with these exciting PPMD/RFOS events:
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.
