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!