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PPMD's Annual Connect Conference Heads to Denver - June 2010
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PERSON of the MONTH
Robert Knight, older brother of Jack Knight who lives with Duchenne, is an exemplary young man who has done what he can to support, protect, and advocate for Jack. This month, we travel to Robert's home state of Colorado for the Annual Connect Conference. Colorado is also home to the 7th Annual Keep Jack Jumping Golf Tournament, a yearly event the Knight family hosts that has become a summer tradition for local residents and that Robert has played an integral part of since its inception. In a day when younger generations are criticized for being selfish and entitled, Robert has emerged as an active participant in PPMD's fight to end Duchenne. He will run as many miles as it takes, volunteer as many hours as he needs to, to help his brother live the life he deserves. That is why this month we acknowledge a special young man in our community, Robert Knight.
One Minute a Day = $250K for Research
Our friends in the fight to end Duchenne from other organizations are competing for $250,000 in the Pepsi Research Project. Led by the Jett Foundation, this is a simple way for you to help Duchenne research get the funding it so desperately needs. And all it takes is one click a day during the month of June. Click here to learn more and start making your vote count!
Help Shea Racing,
Help Duchenne
Up and coming race car driver Shea Holbrook takes to the track on July 3 for one of the biggest races of her young career. Support Shea Racing and help cheer her on! Read her pledge letter. A portion of all donations go to PPMD.
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.
Stay Plugged In
 Facebook
 Twitter
 RSS
 YouTube
 Flickr
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PPMD's Annual Connect Conference
Launches Scientific Track
This year's Connect Conference in Denver, June 24-27, 2010 will not only a boast a new host city, but an incredible new scientific conference: the Duchenne Therapeutic Development Meeting. Running parallel to our Connect Conference, this meeting boasts forty distinguished scientific speakers, representing eight biotech companies (including AVI, GSK, Acceleron, and PTC Therapeutics), and will be the most comprehensive Duchenne-specific, scientific meeting in the U.S. Attendees to the Connect Conference will have the opportunity to attend sessions at the scientific meeting, as well as interact with speakers. Learn more about this great new addition and check out the complete agenda for both Conference tracks.
Ataluren Update
Sharon Hesterlee, Ph.D., PPMD's Senior Director of Research and Advocacy, has put together a chart resulting from the survey parents were asked to fill out regarding the ataluren trials. Check out the data PPMD was able to compile based on your feedback. Plus, read Pat Furlong's blog about the recent update call with PTC Therapeutics.
AVI Releases Promising Data
AVI Biopharma, Inc., a Seattle-based biotechnology company that is developing RNA-based drugs for Duchenne, released initial summary data from its Phase Ib/2 study of AVI-4658 showing that some boys who received the highest doses had increases in dystrophin that may be within the predicted therapeutic range. Read a synopsis of AVI's results.
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Dog Days of Advocacy
Just because DC is more or less closed for summer, it doesn't mean our advocacy work takes a break. Summer meetings with your Member of Congress provide a tremendous opportunity to advance the treatment and care for Duchenne. Last year, local advocate meetings yielded positive results for federal research and education efforts. This August, we need veteran and first-time advocates to engage again on our legislative and regulatory agenda. PPMD will work with you to schedule meetings, and provide materials and training. It is your ability to communicate with Members of Congress that ultimately makes the difference. Click here to learn more about how you can get involved in the fight to end Duchenne.
PPMD's Responds to FDA on Your Behalf
On June 29th, the Food and Drug Administration is holding a public hearing called "Considerations regarding FDA review and regulation for Articles for the treatment of rare disease." As part of our mission, PPMD strives to stay on top of all FDA and NIH issues relating to Duchenne...and rare diseases in general. PPMD’s Senior Director of Research and Advocacy, Sharon Hesterlee, Ph.D., submitted comments after hearing from the community. Click here to see what was submitted.
PPMD also had the opportunity to submit comments to the NIH-FDA Joint Leadership Council with suggested changes to the biomedical research process. Please click here to read those comments.
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Eclipse Duchenne
Every now and then, we like to tell you about a fundraising event that is innovative, creative, and just plain fun! On June 29, in Grand Rapids, Michigan, a community will gather for a special party and movie screening of the latest Twilight film, Eclipse. Families, students, neighbors, and local media are creating a memorable experience for those attending this special night. Donors will see Eclipse the day before it opens to the rest of the public, and will learn about Duchenne in the process. Click here to learn more about the event, and don't hesitate to contact PPMD if you have fundraising ideas you want help bringing to life. We are so appreciative of all of our families and friends who do events of any size on behalf of boys with Duchenne!
Top Draft Pick: YOU!
PPMD needs you to start warming up for the 3rd annual Coach To Cure MD on September 25, 2010. However active you can or want to be, we need you to throw an event, or recruit your local high school or college to participate, or just spread the word! Last year was so successful and we want to make this third year a truly historic event for the Duchenne community. Learn more about Coach to Cure MD, and if you want to volunteer, have connections to corporate sponsorship, or think a school in your community would be interested in participating, please email our returning Head Captain, Rachel
Poysky. GAME ON!
Join Our Team, Wear Our Green
Make this the year you finally buy some good running shoes, train hard, and go the distance with us to end Duchenne. Run For Our Sons still has spots available in some of our most exciting races of the year. Sign up for:
Disneyland
Half Marathon
Bank
of America Chicago Marathon (60% full)
ING New York City Marathon (50% full)
And being a teammate has its benefits! Attend our exclusive pasta party the night before each race, don our great looking Run For Our Sons technical t-shirt, take part in fundraising challenges that get you and your family exclusive perks at each race, and most importantly, run for those who can't. Join RFOS today!
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When Words Fail Us
Susan Smalley, Ph.D., from UCLA's Department of Psychiatry and Biobehavioral Sciences, writes a beautiful essay about the range of emotions we all face as parents, especially when we are raising a child with Duchenne. Check out her essay and make sure you are a member of PPMD's Community Site, an excellent forum for you to share your experiences, emotions, and stories with an audience of friends on a similar journey.
PPMD's 2010 Annual
Connect Conference:
Last Chance to Reserve Your Room
On June 10, 2010, PPMD will have to relinguish any unused rooms in our room block for PPMD's 2010 Annual Connect Conference in Denver, Colorado. As mentioned above, this year's Connect Conference promises to be the most thorough and extensive conference in our organization's 16-year history and will be a first for the Duchenne community in many ways. We want to make sure you and your family are attending!
Check out our comprehensive agendas and see why we are so excited about the Connect Conference. To download the agenda for the Connect Conference, click here. To download the agenda for the Duchenne Therapeutic Development Meeting, click here.
We are also excited to announce PPMD's first Kids Track on Friday, June 25. Make sure you and your family are part of this incredible annual, one of a kind event in the Duchenne community. Visit our Connect Conference landing page and join us in Denver! Contact PPMD with any questions.
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:
June 24-27, 2010
Annual Connect Conference in Denver, CO
June 26, 2010
Rock 'n' Roll Seattle Marathon
& Half Marathon
June 28, 2010
Jumping Jack Golf Tournament, Westminster, CO
June 29, 2010
Eclipsing MD in Grand Rapids, MI
July 11, 2010
Comic Relief for DMD, Seattle, WA
July 29, 2010
JOA Picnic in the Park
September 5, 2010
Disneyland Half Marathon
September 18, 2010
Harvest the Dream Auction in Seattle, WA
September 25, 2010
Coach to Cure MD - Nationwide
October 10, 2010
Bank of America Chicago Marathon
October 17, 2010
Rock 'n' Roll Denver Marathon & Half Marathon
November 7, 2010
ING New York City Marathon
December 5, 2010
Las Vegas Marathon & Half Marathon
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 2009 — All Rights Reserved.
158 Linwood Plaza, Suite 220 Fort Lee, NJ 07024
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