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  PPMD Funds $1 Million in Cardiac Research – April 2011
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PERSON of the MONTH
"A picture is worth a thousand words."
Never
has the quote spoken such truth as it has with new images created by
our April Person of the Month, Mitch Sevier. Mitch is a talented
photographer and father of a son with Duchenne. He has put together
some
incredible images that truly capture what Duchenne “looks” like.
These photographs illustrate Duchenne in a way PPMD has never
experienced. Mitch has donated these images to the community so
that you can share the Duchenne experience with people in your
life who need something visual to understand how Duchenne affects the
body. Check out these incredible images and learn more about Mitch Sevier.
Double Your Gift!
These days, many companies will match your donation to a nonprofit organization. And PPMD is excited to make finding out if your company matches, even easier! By simply clicking here, you can visit our new matching gift search function. If you're place of work matches, they should come up in the search along with the simple steps you have to complete to have your gift matched. We are so grateful for every donation we receive. Why not see if your gift can be doubled?
Spring Shopping While You Support PPMD!
Spring is upon us, and with it brings a slew of holidays you will need gifts for: Easter, Mother's Day, and Father's Day...just to name a few. Shop year round through Amazon and a percentage of your purchase will be given to PPMD. Click on the Amazon.com link from the PPMD web page. 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!
Amazon is more than just an online bookstore these days. Find something for everyone. 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
 Facebook
 Twitter
 RSS
 YouTube
 Flickr
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PPMD Awards $750,000 Grant
PPMD has awarded a $750,000 to Ronald G. Victor, M.D. of Cedars-Sinai Medical Center, to fund his study of phosphodiesterase inhibitors (sildenafil and
taladafil) as a possible therapy for Duchenne. Dr. Victor and his team at the Cedars-Sinai Heart Institute in Los Angeles discovered a defect in muscle blood flow in mdx mice and boys with Duchenne. Correcting this defect with phosphodiesterase inhibitors (sildenafil and taladafil) improves muscle and heart function in mdx mice. This grant to Dr. Victor combined with our recent $250,000 grant to PTC Therapeutics (featured in February's newsletter), gives us a total research investment of $1 million in the first quarter of 2011 towards the cardiac initiative we launched on January 1. Read the press release.
Phrixus Announces $890,000 in NIH Funding
for Duchenne Program
Phrixus Pharmaceuticals, Inc., a clinical-stage, specialty
pharmaceutical company focused on innovative therapies for Duchenne, announced that it has received a total of $890,000 in awards from
the NIH. Funding is in the form of one SBIR Phase 1 award titled “Effects of P-188 on Respiratory Function and Diaphragm Degeneration in the mdx Mouse” and one STTR Phase 1 award titled “Poloxamer 188 Mechanism of Action in Ischemic Heart Failure.” Read the press release.
GSK Now Recruiting for Exon 51 Clinical Trial
in Non-Ambulatory Patients
GlaxoSmithKline is recruiting for a double-blind, escalating dose, randomized, placebo-controlled study
assessing PK, safety, and tolerability in Non-ambulant Duchenne patients. For more information about this trial and others, please visit DuchenneConnect.
The Challenge of Developing Exon Skipping
for Duplication Mutations
With all the discussion in the Duchenne community about exon skipping - a potential therapy that continues to move forward for various exons - we have received questions from parents about how this would translate to duplication mutations. Dr. Annemieke Aartsma-Rus from the Department of Human Genetics at Leiden University Medical Center in The Netherlands, has written an essay for the community to help explain why duplication mutations present an added challenge to exon skipping. Exon skipping is just one therapy being looked at to treat duplication mutations. Researchers are looking at other alternatives, including combined therapies. Read Dr. Aartsma-Rus's essay.
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Advocacy Alert:
Let Your Voice Be Heard From Home
Congress
may still be discussing this year’s budget, but we need to stay vigilant and
push for maintaining funding levels for the 2012 budget. Whether you attended
this year's Advocacy Conference or not; whether you have ever advocated for
Duchenne or not – We need your help and your voice! Learn how. It's easy, only takes a few
minutes, and you can do it from your home or work computer. Don't count on
someone else to make a difference. Speak up for all those affected by Duchenne!
A New Champion for Duchenne:
Senator Stabenow
We are pleased to report that Senator Debbie Stabenow
(D-MI) has agreed to serve as the lead Democrat on our FY12 funding
letter alongside Senator Roger Wicker (R-MS). PPMD is grateful for all the
support the Senator has given over her past ten years in office. She has been a
consistent vocal supporter of individuals and families impacted
by Duchenne, on our behalf. We are extremely fortunate to have her lead our efforts to
maintain funding for Duchenne and Becker research and education programs.
Please take a moment to send the Senator a thank you letter (download letter). You
can also leave a comment on her website.
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RUN FOR OUR SONS:
News & Events
** Run For Our Sons is excited to welcome our new Endurance Program Manager, Nicole Rottino. Nicole comes to Run For Our Sons & PPMD with 12 years of communications and marketing experience, mainly working with nonprofit organizations. If you haven't already, meet Nicole and welcome her to the Run For Our Sons family!
** We are thrilled to announce several new additions to our most popular race event each year: Walt Disney World Marathon Weekend. This year we are including a marathon relay, a Family Fun Run 5K, and a Family Fun Run 5K - Stroller Division. Everyone in your family, regardless of experience or athletic ability can now participate in this incredible weekend! Learn more.
** If you're on the west coast or have always wanted to check out Disneyland, the park that started it all, join us for the Disneyland Half Marathon. Registration is closed, but we still have spots at this magical Labor Day weekend event. Check it out.
** Start spreadin' the news! Join Run For Our Sons at one of the most sought after marathons in the country, if not the world: 2011 ING New York City Marathon. Spots are limited, but we have them and want you and your friends to join us as we pound the streets of NYC and go the distance to end Duchenne. Fill out the survey today.
** Follow us on Twitter! Now you can stay connected to our great Run For Our Sons events on both Facebook and Twitter.
Visit the Run For Our Sons website for everything you need to know about our upcoming races, plus great fundraising and training tips.
Meet Our United Way Parent Support Volunteer
Many families are
having great success supporting Duchenne research through their local United
Way efforts. One family raised over $10,000 in one morning! To help
parent's drive even more success, we are pleased to announce a new PPMD United
Way Parent Support Volunteer, Ruth Getler. Ruth can help you by
answering United Way related questions, helping to communicate with company's United Way campaign staff, sharing promotional signage and email
templates, and even helping you liaison with local/regional United Way
offices. First, download and print the useful guide the Getlers created in November, to help you navigate the United Way. Please do not hesitate to email Ruth with any questions or if you need support. Your active
involvement in the United Way framework is another major component in funding
Duchenne research.
Summer Camp Time Approaching!
With spring in full swing, summer is just around the corner. This year, there are more opportunities than ever for young men with Duchenne to participate in accessible summer camp. With the return of the MDA's Summer Camp program and Camp Promise West, plus new additions like Camp Promise East and the Romito Foundation's Camp Thunder Mountain, our sons can enjoy nature and make memories that will last a lifetime:
**MDA Summer Camps: Various locations throughout the U.S., and all during the summer. Find out more.
**Camp Thunder Mountain: June 3-5, Easter Seals Rocky Mountain Village, Empire, CO. Find out more.
**Camp Promise East: July 31-August 6, Camp Hemlock, CT. Find out more by contacting the Jett Foundation.
**Camp Promise West: August 22-28, Vaughn, WA. Find out more.
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REGISTRATION IS OPEN:
PPMD Connect Conference in Baltimore
Have you made your plans for Baltimore yet? If not, now is the time to book the family trip to PPMD's Annual Connect Conference. Join us July 7-10 at the Baltimore Marriott Waterfront. A closed scientific workshop will begin on Wednesday,
July 6. The Connect conference will begin on Thursday, July 7. There is an extraordinary amount of activity going on in Duchenne research, care, advocacy, etc., and it is our goal to update you on everything that matters most to you and your family. For details
about our hotel room block, Conference registration, Kids Track, and a
special event at the National Aquarium in Baltimore, visit our Connect Conference landing page. See you in Baltimore!
PPMD Launches New App
PPMD is excited to announce the release of our new, free mobile applications designed specifically for the iPhone iPad, and Android.
In today's technology age, your most important resource is oftentimes
your cell phone - which has become so much more than just a cell phone.
PPMD's new app will put emergency care information, critical research
news, and advocacy alerts at your fingertips, instantaneously. The next time you are meeting with your doctor and want to access
information from PPMD's vast research or care archive, you can. The next
time you have to take your child to the emergency room and are unsure
what safety measures must be taken into consideration, the PPMD app is
there. The next time you are in an IEP meeting and need to make sure you
went through your checklist of discussion items, your go-to resource is
available. Anywhere you go, we are there. Learn more about this important tool and download it today.
Education Matters:
New Learning & Behavior Guide Available
PPMD Board Member and Clinical Assistant Professor at Baylor College of Medicine, James T. Poysky, PhD, has written a companion piece to Education Matters - PPMD's guide to better assist parents and teachers in providing a quality education for the student with Duchenne. Dr. Poysky delves deeper and more thoroughly into behavior issues that may arise in the classroom. This is a great resource for you to have in hand when you meet your child's new teacher, counselor, or school administrator. Visit our updated care section to check out the new guide and download your copy.
SAVE THE DATE
There are so many opportunities for you to help raise awareness and learn more about Duchenne. Check out PPMD's extensive online calendar.
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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