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  A Decade of Advocacy, A Decade of Progress - February 2011
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PERSON of the MONTH
Next week, Parent Project Muscular Dystrophy marks a decade of advocacy at PPMD's annual Advocacy Conference in Washington, D.C. A major reason PPMD even has an advocacy program is because of our February Person of the Month, Joel Wood. Joel is a father of a 13-year-old with Duchenne and a federal lobbyist. Over the last ten years, he has used his connections and his knowledge of Capitol Hill to help the Duchenne community build an incredibly strong and successful advocacy program. Always outspoken, always hooked in to the players in Washington, Joel is our Person of the Month as we head into our Advocacy Conference for being one of our strongest and most passionate voices in our nation's capital. Meet Joel Wood.
Buy For Your Valentine Through Amazon,
Raise Money for Duchenne!
We continue to raise money for our fight to end Duchenne by shopping through Amazon. Send the people you love a Valentine treat and a percentage of your purchase will be given to PPMD. Click on the Amazon.com link from the PPMD web page, and PPMD will receive a percentage of each sale. 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
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 Twitter
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 YouTube
 Flickr
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PPMD Awards $250,000 Grant to Further Study
in Cardiac Treatment
PPMD has awarded PTC Therapeutics a grant of $250,000 to continue their work identifying new medicines that increase the amount of SERCA2a in the heart, resulting in improvements in calcium transport and heart function. Read the press release.
Webinar: DELOS Study Update
Dr Richard Finkel, M.D. (Division of Neurology, Children's Hospital of Philadelphia) will present a short update on Duchenne and its current treatment options, and give an overview of the ongoing phase III study with Idebenone (DELOS Study) for which Dr. Finkel serves as Principal Investigator for North America. Participants are invited to an open question and answers session. The webinar will take place on Thursday, March 3rd, 2011 starting at 2pm EST and will last about 45 minutes. For more information, including how to log in to the webinar and submit your questions ahead of time, click here.
Prothelia Gives Update on Laminin-111
Bradley L. Hodges, Ph.D. CSO from Prothelia, Inc. issued the following statement to the PPMD community: "Prothelia would like to
thank PPMD for continued financial support of our laminin-111 therapeutic
project. We utilized the $20,000 received from PPMD to
generate additional preclinical data and to assist in developing our primary
and secondary manufacturing processes. As part of the manufacturing
development process, we identified several antibodies to the individual protein
components of human laminin-111. These antibodies are critical tools that
assess the productivity, purity, and size of human laminin-111 to be
produced. Laminin-111 continues to
demonstrate that it will be a strong drug candidate to help those suffering
from Duchenne muscular dystrophy. It is our goal to drive this
therapeutic to market as quickly and safely as possible.” Look for continued updates from Prothelia.
GSK and Prosensa Announce Start of
Phase III Study
Late last month, GlaxoSmithKline (GSK) and Prosensa today announced that the first patient has commenced treatment in the Phase III clinical study investigating GSK2402968 (`968), in ambulant boys with Duchenne, who have a dystrophin gene mutation amenable to an exon 51 skip (up to 13% of boys with Duchenne). Read the press release.
NIAMS Research Announcements
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) recently announced research initiatives specific to the muscular dystrophies. Learn more.
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Duchenne Community Heads to
One Voice Advocacy Summit
PPMD marks ten years of advocacy with our annual Advocacy Conference and the first-ever One Voice Advocacy Summit. Each year we gather in Washington, D.C. to visit the offices of our Members of Congress. The result of your advocacy efforts over the last decade have resulted in $192 million in Duchenne-specific federal investment. The One Voice Advocacy Summit provides an unprecedented opportunity for discussion with stakeholders and key thought leaders on pressing issues that impact the lives of boys with Duchenne and for direct engagement with national policy makers to demonstrate the importance of continued Duchenne research funding. Learn more about PPMD's Advocacy Conference from our recent press release, and check out a full agenda for next week.
If you cannot attend next week's One Voice Advocacy Summit, parent advocate Brian Denger will be blogging live from the summit. You will be able to access Brian's blog updates by visiting PPMD's community site.
ADVOCACY ALERT:
Let Your Voice Be Heard From Home
Every year, from our Advocacy Conference, we send out an Advocacy Alert to the community asking you to contact your Senators and Representative with specific messaging and requests. On Tuesday, February 15 we will be reaching out to you again. It takes just a few minutes to fill in the email form so that your voice can be heard in Washington, while your fellow advocates are visiting offices on the Hill. This combined effort has shown incredible results. If you have received this newsletter via email and live in the United States, you will get the Advocacy Alert. If you wish to sign up, click here. Your voice counts!
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RUN FOR OUR SONS:
News & Events
** Run For Our Sons is actively recruiting for some of our most exciting races of the year! Check out the Run For Our Sons website for a full list of upcoming races in 2011. You may be surprised to find out that there is a marathon in your hometown. If you are taking part in a race that is not listed or if you have a question about registration, email us . We can't wait to cheer you on as you go the distance to end Duchenne!
** Congratulations to our Run For Our Sons team at PF Chang's Rock 'n' Roll Arizona Marathon & Half Marathon! Led by Arizona parent Jill Castle, this passionate west coast team of 11 raised $20,000 and while running in this sun & fun-filled Arizona street party.
** If you are one of the 100+ runners who participated in the WALT DISNEY WORLD Marathon and Half Marathon last month, check out photos from this amazing weekend (Password: PPMD). There are hundreds of great shots of our runners and families. And mark your calendars to join us next year, January 5-8, 2012 for another incredible experience. Keep visiting the Run For Our Sons website for registration details.
Spring is Coming...We Promise!
Recently our groundhog friend predicted that spring is coming sooner rather than later. And now is the perfect time to take out your calendar and plan a spring or summer fundraising event to raise awareness and money to fight Duchenne. Maybe you can turn spring cleaning at your house into a successful garage sale. Or enjoy NCAA March Madness with friends and create brackets with winnings going to Duchenne. Or put together a family fun run in your community. Whatever your idea, 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. If you do decide to host an event, make sure you find out how your local United Way chapter can help. Download and print this useful guide put together by the Getler family, to help you navigate their sometimes complicated system, but one that means more funding for Duchenne research. If you need more information about getting your fundraising event started, contact us today. Thank
you for all that you do for this community to help us end Duchenne!
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The Meeting:
Patient Organizations & Drug Development
Elizabeth Vroom of Duchenne Parent Project in the Netherlands is hosting a conference on March 24, 2011 with industry, scientists, patient organizations, and policy makers regarding the role patient organizations play in drug development. This conference is open to anyone interested in attending. Mark your calendars. Click here to find out more information, including a list of speakers and an agenda.
Patient Voice TREAT-NMD Workshop
Last September the TREAT‐NMD Patient Voice Workshop was held in Milan, Italy. 34 participants from 17 countries, representing 17 patient organizations attended the meeting with TREAT‐NMD partners and professionals. Attached is a summary of this comprehensive workshop. The goals of the workshop included examining the different needs of all Patient Associations so that the TREAT‐NMD network can contribute towards fulfilling them. Read the summary.
MARK YOUR CALENDAR:
PPMD Connect Conference in Baltimore
PPMD reminds you that the 2011 Connect Conference and the 2011
Duchenne Therapeutic Development Meeting will take place at the Baltimore Marriott Waterfront,
July 6-10, 2010. The scientific conference will begin on Wednesday,
July 6. The Connect conference will begin on Thursday, July 7. Details
about our hotel block will be
posted in the March newsletter. Keep in touch with PPMD on our website or through our Facebook page for more Annual Connect Conference details as they become available. See you in Baltimore!
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:
All February
Bearduary
February 13-15, 2011
PPMD's Annual Advocacy Conference
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
April 10, 2011
GO! St. Louis Marathon and Half Marathon
April 16, 2011
(ELEV8)TION GAIN
April 17, 2011
River City Marathon & Half Marathon
May 13, 2011
Pour for a Cure
May 14, 2011
1st Annual Cooper's Win to End Duchenne
June 25, 2011
Rock 'n' Roll Seattle Marathon & Half Marathon
June 11-26, 2011
Journey to End Duchenne - El Camino de Santiago
July 6-10, 2011
PPMD's Annual Connect Conference
September 4, 2011
Disneyland 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.
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| 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
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