Happy New Year! 

Below is a brief PPMD update on a few topics.

Best wishes for a wonderful 2005 - 365 Days of Willing!

 

 

Parent Project Muscular Dystrophy

2005 Duchenne Muscular Dystrophy Awareness Week

YOUR HEART IS A MUSCLE TOO!

 

February is the time of year where hearts can be seen everywhere you look.  Thoughts of love are in the air.  We remind our friends and families how much they mean to us by sending cards and heart shaped boxes of candies.  We give an extra hug or kiss to those we love.  For boys diagnosed with Duchenne muscular dystrophy, showing that love by giving a hug or a squeeze can sometimes be impossible.  Did you know that it takes 42 muscles to hug someone?  It takes 6 muscles to kiss someone with a simple peck.  And it only takes one muscle to make a difference? that muscle is your heart.  This Valentine?s Day won?t you help us remind the world that YOUR HEART IS A MUSCLE, TOO.

 

PLEASE VISIT www.parentprojectmd.org to register for Awareness Week and to get started with the PPMD Hope Hearts.   I WILL Raise Awareness!

 

 

 

PARENT PROJECT MUSCULAR DYSTROPHY

2005 Legislative Conference

March 6th - 8th, 2005       Washington, DC

 

CALLING ALL ADVOCATES:

 

?          Want to make a difference in the lives of children living with Duchenne and Becker    muscular dystrophy?

 

?          Want to take the fight to Capitol Hill for federal funding for MD translational research?

 

?          Then join us at the Parent Project Muscular Dystrophy's 2005 Legislative Conference March 6-8, 2005!

 

Please consider attending PPMD's Legislative Conference in Washington, DC, scheduled for March 6-8, 2005.  We need you to carry the PPMD message and meet directly with Members of Congress.  Your goal will be to communicate directly with your Senators and Representatives that this generation of boys needs every possible federal government dollar to be invested in Duchenne MD translational research.

 

TO REGISTER FOR THE 2005 ADVOCACY CONFERENCE AND TO READ MORE DETAILS REGARDING GOALS AND AGENDA, PLEASE VISIT www.parentprojectmd.org

I WILL Advocate for my son!

 

 

 

PPMD PROVIDES SUPPORT FOR PHASE I/II CLINICAL TRIAL

In collaboration with DPP (the Netherlands) and UPPMD (International Parent Project Muscular Dystrophy) PPMD has agreed to provide support for the Phase I clinical trial on exon skipping in the Netherlands (Intramuscular antisense oligonucleotide delivery-AON)

The aim of the Phase I trial (local administration/single muscle) will be to assess safety of local administration of the Antisense oligonucleotide (AON).  In addition to safety, biopsies will be done to determine if Dystrophin was expressed and in what percentage.   This proof-of-principle will provide the opportunity to substantiate safety and efficiency in patients in a single muscle.   This study will involve boys between the ages of 9 and 16 years of age, targeted at exon 51 skipping.  The trial is planned for February, 2005.

PPMD will continue to work in collaborative effort with the DMD community to accelerate translation of AON.  Next steps include clarifying scientific and technical hurdles, insuring adequate support to facilitate trials and providing assistance with regulatory agencies.

We will continue to provide updates on this promising approach.

I WILL Support Research!

 

 

 

BLOGGING IN THE NEW YEAR

One of PPMD?s New Year?s resolution is to start a blog, a running dialogue of what?s happening, what we are thinking, what?s in our head.  On any one day, you may find a range of topics, while on others, something in particular may dominate.   Our hope is that you find information, insight, hope and perhaps some comfort knowing every day and every minute of every day, we are working for your son, grandson, nephew, friend.

Look for Pat?s blog on our website at www.parentprojectmd.org very soon!

 

 

 

 

HOUSE OF HOPE RAFFLE

House of Hope Raffle to benefit PPMD has been postponed!

Drawing will NOW be held February 18, 2005. (Postponed from January 13) Due to four hurricanes in Florida during August and September, the HOUSE OF HOPE sponsors lost months of building time and promotion activities for the fundraising campaign. So, in the best interest of the children and charities that the raffle benefits, HOUSE OF HOPE is extending the campaign another month.  The drawing will now take place on February 18, 2005 which coincides with PPMD?s DMD Awareness Week.  

 

Tickets to participate can be purchased at $20 each or SEVEN for $100 for an opportunity to win this beautiful home valued at over $250,000!!  You need not be present to win.  For more information and to participate visit:  www.HouseOfHopePSL.org OR call 1-800-564-6104

 

 

 

I WILL WRISTBANDS

PPMD?s lime green I WILL wristband has become a wonderful way to show your support of the DMD community.  Our wristbands have the words I WILL and the PPMD logo embossed into the heavy gauge silicone band.  Selling for $2.00 each or 12 for $20, these wristbands are making a mark around the country and even internationally. 

 

To see a picture of these wristbands and to order, please visit the merchandise area on our website or call (201)944-9985. 

 

RUN FOR OUR SONS DISNEY MARATHONG TEAM

The PPMD RUN FOR OUR SONS Disney Marathon Team is 86 runners strong.  Parent, Grandparents, Family Members, Physicians, Researchers and Friends from across the country will be running this Sunday, January 9, 2005 in the WALT DISNEY WOLD Marathon and Half Marathon.  Every member of this team has made a commitment to not only run but to raise funds for DMD research, a goal we are proud to announce has thus far generated over $100,000!  PPMD is extremely grateful to all of our runners and their sponsors for making this event a huge success.  With every step these runners take we are reminded that

Hope sees the invisible

Feels the intangible

Achieves the impossible!

 

If you would still like to show your support and pledge a donation to the RUN FOR OUR SONS team, you can do so by visiting www.justgiving.com/pfp/teamppmd or by calling (201)944-9985. 

 

To track the progress of the runners, log onto www.disneyworldmarathon.com on the day of the race to find out how the runners are doing. Official race results will be posted on www.disneyworldmarathon.com on Sunday the 9th beginning at 5:00 p.m. 

 

Look for photos, highlights, results and more to be posted on the PPMD website later on this month.

I WILL Make a DIFFERENCE!