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End Duchenne eNews
A New Year of New Programs - January 2009
Research Donate Now Forward to a Friend PPMD News

The Holidays Have Been Extended!
If you have not had the opportunity to support a 2009 “parent project,” this is your chance to help PPMD achieve some of the crucial milestones we have set for ourselves in 2009. Learn more:

Dec 08 Holiday

Where's Pat?
Pat Furlong, founding President of Parent Project Muscular Dystrophy, is always traveling to attend the latest conference, meet with the newest research team, advocate with members of Congress, or participate in events that PPMD families throw around the country. You can find out what she’s up to and what she has to say, by checking out her blog on the PPMD Community Site. And if you haven’t joined the PPMD Community Site, start off 2009 connected to this growing network of families and friends.
Read Pat's Blog

Pat Furlong

Does Your Company Match? You work for them, now get them to work for you! Many employers now offer matching gift programs where they will match, dollar for dollar, your gift to a nonprofit organization such as PPMD. If you have not taken advantage of your company’s generosity or don’t know if your company offers this benefit, ask the HR or payroll department at your place of employment.

Duchenne Connect half banner

Are you CONNECTED? DuchenneConnect links our entire community — patients and families, medical/research professionals, and the medical/pharmaceutical industry, and brings you the latest information about current treatments and clinical trial opportunities. We encourage you to join today to access new care and testing information and to connect to the powerful network of professionals working to end Duchenne.

First End Duchenne Grant is Awarded
Brown University and Justin Fallon, Ph.D were recently awarded the inaugural End Duchenne Grant Award, as PPMD launches the End Duchenne Grant Award Program, in partnership with the National Institutes of Health (NIH). For more information about the End Duchenne Grant Award and Dr. Fallon's work, check out the press release. If you would like to learn more about the End Duchenne Grant Award Program and criteria by which grant applicants are judged, visit the PPMD website.

Project Catalyst: Year End Update From PTC
PTC has provided a year-end update for Project Catalyst, which made significant progress in 2008. Read about the latest findings. To learn more about Project Catalyst and read past reports, visit the PPMD website.

 

  Jan 09 DNA

Advocacy
Last Chance to Register!
Advocacy Conference 2009
The Parent Project Muscular Dystrophy (PPMD) Advocacy Conference, held in the first quarter of each year, is the only officially organized gathering on Capitol Hill for the Duchenne community. The conference will be held February 8-10, 2009 in Washington, D.C. This year, the focus of the conference will be thanking members of Congress for their support of the Reauthorization of the MD-CARE Act and asking them for their help in appropriating the dollars needed to continue funding vital Duchenne research. For more information about the conference, including making hotel reservations and registration, please visit our Advocacy Matters center online. Please note: the hotel deadline for the PPMD block is January 12.

PPMD Signs onto Letter to Congress
In late December, PPMD signed onto a letter to Congress urging increased funding for biotechnology companies to be included in a proposed economic stimulus package. Read the letter we signed on behalf of the Duchenne community.

 

  Jan 09 DC

 

   

 

Jan 09 Letterwriting

Community
Is Georgia on Your Mind? How About Pigs?
As Run For Our Sons continues to grow, we are thrilled to include the ING Georgia Marathon and Half Marathon in Atlanta on Sunday, March 29th. And we will be returning to Cincinnati again this spring for the Flying Pig Marathon on Sunday, May 3, 2009. Nothing beats the comradery and feeling of accomplishment that being a member of a Run For Our Sons team can bring. And both of these marathons are great events to add to your running repertoire…or if you’ve always wanted to run for a great cause, but were afraid to take a shot, try out the Georgia or Flying Pig Marathon! The deadlines for both races are quickly approaching. Be part of the fun by joining our team today!

Are You Doing All You Can?
The economy is as challenging as it has ever been in most of our lifetimes. And like most of us, you are probably feeling like every penny is being stretched as far as it can. But that doesn’t mean that your options to help PPMD end Duchenne have to be any more limited. Get involved! And if you are already involved, get more involved! There are a variety of programs that take few resources but reap huge rewards for our boys.
Join a Run For Our Sons team, throw a fundraiser, or become a S.T.I.R. member. Contact PPMD today to get more involved: 1-800-714-5437.

 

 Jan 09 Runner 

      



  Join S.T.I.R. for a free gift  

Education
DuchenneConnect Celebrates First Anniversary
Early in 2007, a group of thought leaders in the Duchenne community, led by PPMD, began discussing the need for a new kind of resource that would connect and serve the needs of the entire community. What they envisioned was a central hub that would bring together those living with the disease, along with their families, friends and caregivers, to connect them with medical research, clinical care, clinical trials and each other. At the same time, it would also be a resource for industries with an interest in Duchenne, allowing access to a database of information provided by patients and their families—information that could prove vital to advances in care and treatment. The result of this endeavor is DuchenneConnect, which is celebrating a year of bringing families and physicians together like never before. If you are not familiar with this incredible resource, visit DuchenneConnect today.

Duchenne FACES Launch
As 2009 begins to take off, PPMD is excited to announce a new outreach network in its Duchenne FACES program. At the end of January, families and friends in Illinois looking to become more involved in the Duchenne community will converge on the Chicago area. The Illinois network will be led by Kristin Hiatt and Sandy Mabus. A new program launched last fall in New Jersey, Duchenne FACES (Families Advocating, Connecting, Educating, and Supporting) will be the official parent-led outreach initiative of PPMD. With a focus on family mentoring, fundraising, and grassroot events, FACES will open additional outreach networks in Texas and Arizona later this year. To learn more about FACES and to get involved in your area, visit the FACES page of our website.

Your Opinion Matters
After being contacted by a genetic counseling student at Boston University School of Medicine, PPMD has agreed to ask you, our families in the community, to participate in a research study to summarize the understanding of genetic concepts among parents of children with Duchenne and Becker muscular dystrophy. The ultimate goal of the project is to assess current genetic counseling practices and make recommendations to improve the service received in the future. If you have a  few minutes to spare, please participate in this important study.

SAVE THE DATE
The calendar for 2009 is already filling up. Make sure you don’t miss these great opportunities to get more involved with PPMD!

January 10-11, 2009
Walt Disney World Marathon Weekend - Orlando, FL
January 11, 2009
PF Chang’s Rock & Roll Marathon - Arizona
February 8-10, 2009 
PPMD Advocacy Conference - Washington, D.C.
March 29, 2009 
ING Georgia Marathon Atlanta, GA
April 2009 (TBD)

PPMD Virtual Roundtable (topic TBD) 
May 3, 2009
The 11th Flying Pig Marathon - Cincinnati, OH
June 25-28, 2009
PPMD’s Annual CONNECT Conference - Atlanta, GA

   
Jan 09 1st Bday

 

 



      

 Nov 08 FACES pic

 

 

 

  Jan 09 Survey

 

 

  Nov 08 2009 Calendar

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.
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