Parent Project Muscular Dystrophy
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Back to School & Coach To Cure MD
September 2012
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Fall is the start of a new year for so many of us, in so many different ways. Ivy Scherbarth and I talk about this time of year in our co-blog this month – the simultaneous longing for the lazy days of summer and the excitement of starting a new chapter recharged. PPMD had no summer break. We went straight from Connect Conference mode to Coach To Cure MD and our first End Duchenne Gala. Two exciting awareness and fundraising events – one marking five incredible years, the other launching in New York City this December. We’ve also welcomed a new family member: Mary Connolly, Vice President of Development. Read her blog and meet this great addition to our team, who has hit the ground running to help end Duchenne. We also want to introduce you to our Featured Voice for September, Connor Vassigh. Meet this great first grader and take a moment to join our team if you haven’t already done so!

With school back in session, we have some important information for you on flu vaccinations, medical alert bracelets, and a downloadable webinar on IEPs. We are also launching a three-part webinar series on cardiac issues featuring the most knowledgeable cardiologists in the Duchenne space. Make sure you start the school year off informed and armed with knowledge.

Have a wonderful autumn and we’ll see you on TVs across the country September 29 for the 5th Annual Coach To Cure MD!

Pat Furlong, PPMD Founder & President
P.S. Find out where PPMD has been & what we've been doing!


Connor Vassigh, 6 ½ years old
Research
Interview with Sarepta Therapeutics
Sarepta Therapeutics (previously known as AVI) shared an open letter providing an update to patients, parents, and families on the company’s clinical program and progress. PPMD’s Senior Director of Research, Sharon Hesterlee, PhD, had the opportunity to interview Chris Garabedian, CEO of Sarepta, about the company’s progress and future plans. Read the interview and the open letter from Sarepta.
PPMD Included in FasterCures TRAIN Inventory
PPMD is proud to have been chosen as a featured member of the nonprofit disease research foundation community by FasterCures. As a result, PPMD will be part of The Research Acceleration and Innovation Network (TRAIN) Inventory – a free, public, Web-based resource. This is a great tool to raise awareness and interest from academics and industry about Duchenne. Learn more about TRAIN.
Other Research News
Clinical Trial Update from GSK regarding GSK2402968 (drisapersen) for Exon 51 Skipping (from DuchenneConnect)
Increasing stem cell survival in Duchenne therapy – Sharon Hesterlee explains
Advocacy
2013 Advocacy Conference - Reauthorizing the MD-CARE Act
We are hosting our 12th Annual Advocacy Conference in Washington, D.C., February 10-12, 2013. Registration is open EARLY. We want representation from every state in the country! We need the support of the entire community this winter as we go to Capitol Hill to make our voices heard. This is year is extremely important as we attempt to reauthorize the MD-CARE Act for the third time. Whether a seasoned advocate or a family new to Duchenne, we want you to join us and tell your story to the most important policymakers in our country. Register today.
Advocacy Dates to Remember
Register today: 2013 Advocacy Conference - February 10-12, 2013 in Washington, D.C.
Community
You Brought Home Gold!
Olympic hero Ryan Lochte walked away from the 2012 Games in London with five medals. And thanks to this incredibly generous community, our Go for the Gold campaign was also victorious! This summer we set out to raise enough money to fund tamoxifen and SERCA2a targets with the help of Ryan and his Olympic adventure. We are happy to say that we will be able to fund both projects, bringing us that much closer to the day we end Duchenne. Thank you for texting “JEAH” to 90999, for writing checks, for donating online, and for encouraging your friends to do the same. We are also in debt to Ryan for using his celebrity to help us raise awareness. His commitment to this community is the reason we will be honoring him at the 2012 End Duchenne Gala in December. Together, we went for the gold and made it happen!
It’s Almost Here: Coach To Cure MD V
On September 29, 2011, coaches from your favorite university will be wearing Coach To Cure MD patches for the fifth year in a row to raise awareness for the fight to end Duchenne. To date, Coach To Cure MD has raised $1 million towards the fight to end Duchenne. There is still plenty you can do to make this the best Coach To Cure year ever!

TEXT - Tell anyone who will listen to send a text donation.
TALK - Let you local press know how important Coach To Cure MD is to this community and to the fight to end Duchenne.
TAILGATE - Host a game watching party.

One million dollars over the last four years is great. But let’s raise half that or more, this year alone! Take a minute to read the ways you can help and join our team. You've never had so much fun fighting to end Duchenne!

Run For Our Sons
Race season is underway. Check out what we’ve done, what we’re doing, and what’s coming up.
MEET OUR NEWEST TEAMMATE
First, meet PPMD’s newest teammate, Mary Connolly, our Vice President of Development. Mary is a seasoned long distance runner and happy to be joining the Duchenne community to not only raise money for research, but to go the distance to end Duchenne!
WALT DISNEY WORLD MARATHON WEEKEND
(JANUARY 10-13, 2013)
We have an action-packed weekend planned including a Welcome & Pasta Party, a Victory Party, a full line-up of races, and much more! This year marks the 20th Anniversary of the Full Marathon, which means an extra-special medal and race course. Sign up today and join us in Orlando for a fun-filled family weekend!
MORE RUN FOR OUR SONS UPDATES
• Largest Disneyland team to date raises over $91,000! Read the recap.
Meet Patrick Rownd, this month’s spotlight runner, who has participated in four half marathons over the past year in honor of his son Wyatt.
WE NEED YOU!
The races below are currently recruiting. Make this the year you put on the running shoes and train with your Run For Our Sons friends for one of these great events!
2012 Baltimore Running Festival - October 13
Metro Health Grand Rapids Marathon - October 21
Rock 'n' Roll St. Louis Marathon & Half Marathon - October 21
ING New York City Marathon - November 4
Chevron Houston Marathon - January 13, 2013
My Voice: Connor Vassigh, 6 ½ years old
Connor Vassigh is 6 ½ years old and his family have been among our most active participants in Coach To Cure MD over the last few years. Connor hosts a “Muscle Party,” inviting friends and family to have fun, party together, and enjoy a Saturday of football. He is a first grader who just wants to play video games, play with his dogs, and support scientists in their quest to find dystrophin. So as we mark five years of Coach To Cure MD on September 29, we celebrate one of our youngest teammates, our Featured Voice for September, Connor Vassigh. Meet Connor.
Upcoming Events
• September 15: Miles for Matthew 5K/10K
• September 16: Rock 'n' Roll Philadelphia Half Marathon
• September 21: Tee Up for Tanner
• September 22: Rock 'n' Roll Denver Marathon & Half Marathon
• September 22: 6th Annual FNA 5K and Fun Walk
• September 29: Coach To Cure MD
• October 5: Future Com 11th Annual Charity Golf Tournament
• October 6: Garrett’s Run
• October 6: 5th Annual Rosstoberfest Run
• October 7: Bank of America Chicago Marathon
• October 7: Bike Tour
• October 7: 3rd Annual Ryan’s Day
• October 13: Baltimore Running Festival
• October 20: Harvesting Hope for Andrew 5K Run/Walk
• October 21: Metro Health Grand Rapids Marathon
• October 21: Rock 'n' Roll St. Louis Marathon & Half Marathon
• October 23: Sherlock’s On the Green Golf Tournament
• October 27: Sam’s Day
• October 27: Brookhaven 5K Run/Walk
• October 27: 1st Annual Moonachie Mystery Run
Check out our full Calendar and sync it with your personal calendar!
More Community News
• The AgeView Press has named PPMD President Pat Furlong a Belle of Steel! Read Jeanette Vaughan's great profile of Pat.
His Strength Made Perfect: Michael’s Story – New book by Cyndie Degnan about one family’s journey with Duchenne. Buy through Shop For Our Sons on Amazon.
Read the HerSelf First Fall Newsletter
Education
PPMD Launches Cardiac Webinar Series
Because cardiology is such an important area of care, PPMD will be holding a series of cardiac webinars to discuss cardiac care throughout the life span of Duchenne starting September 26 at 1pm eastern. This series will offer experts across institutions the opportunity to collaborate in informing our community about what they know about the heart and Duchenne. Learn more about the upcoming webinars.
The Flu Vaccine & Duchenne: What You Need to Know
Every year, thousands of people get the flu. A recent study shows that children with underlying neurologic disorders, like Duchenne, are at especially high risk of pulmonary complications from the flu. Be informed and protect yourself and your family. Read PPMD’s Director of Care, Kathi Kinnett's, latest blog about the CDC’s current recommendations.
National Task Force for Early Identification of Childhood Neuromuscular Disorders
Parent Project Muscular Dystrophy, with support from The Centers for Disease Control and Prevention, created the National Task Force for Early Identification of Childhood Neuromuscular Disorders in order to stress the importance of early diagnosis. The Neuromuscular Task Force includes experts in neurology, physical and occupational therapy, primary care, genetics, rehabilitation medicine, as well as experts from advocacy organizations that represent pediatric neuromuscular disorders. Read more about this important task force from PPMD’s Vice President of Education and Outreach, Holly Peay.
Medical Alert Bracelets for Duchenne
PPMD parents have stepped forward with a strong endorsement of medical alert bracelets from Lauren’s Hope – a company that has reinvented itself and become a leader in the medical alert bracelet space. Purchase your medical alert bracelet today, and get 10% off as a member of the PPMD community. Learn more and make sure the person with Duchenne in your life, is protected.
Two Moms, Co-Blogging: Falling into Fall
The end of summer and the arrival of autumn bring up a mix of emotions in both parents and their children. Back to school is exciting, a new start. But it also means the beginning of a flurry of activity – schedules, calendars, and multitasking. In this month’s co-blog, Colorado FACES coordinator and parent Ivy Scherbarth and PPMD President Pat Furlong take on the change of seasons in different ways, but come to the same overall conclusion. Fall is about beginnings and savoring moments. Read their blogs and tell us what autumn means to you and your family.
Other Education Updates
• Did you miss our Back to School Webinar on IEPs and assistive technology in school? Find out everything you missed.
Save the Date: PPMD’s West Coast Connect Meeting, April 26-28, 2013 in San Diego
Make it Happen!
End Duchenne Gala
SAVE THE DATE: Parent Project Muscular Dystrophy will honor Ryan Lochte and others active in the fight to end Duchenne at our first End Duchenne Gala on: Thursday, December 6, 2012 at 7:00 pm - 12:00 am at The Metropolitan Club in New York City, NY. Mark your calendars and plan to join us for an incredible evening that will bring together those determined to change what’s next in the fight to end Duchenne. For more information, visit EndDuchenneGala.org.
Coach To Cure MD
On September 29, 2011, coaches from your favorite university will be wearing Coach To Cure MD patches for the 5th year in a row to raise awareness for the fight to end Duchenne. To date, Coach To Cure MD has raised $1 million towards the fight to end Duchenne. Will you join our team? Participating in Coach To Cure MD has never been easier: Just text, talk, and tailgate!
Shop For Our Sons

It’s that back to school time of year and as your kids head back, don’t forget to turn to Amazon for all of your back to school shopping – not just books! When you shop Amazon, using our link, we raise money for research! Visit ShopForOurSons.org and click the Amazon link. Then shop away. It’s that easy! A portion of all of your purchases will go to PPMD. Share this site and encourage your friends to shop for our sons!
Our mission:
To end Duchenne. We accelerate research, raise our voices in Washington,
demand optimal care for all young men, and educate the global community.
CONTACT
Parent Project Muscular Dystrophy
401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601
t. 800-714-5437
SITES
Parent Project Muscular Dystrophy
PPMD Community
DuchenneConnect
Run For Our Sons
Coach to Cure MD
CONNECT
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© Parent Project Muscular Dystrophy 2012 — All Rights Reserved.

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