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PHA News Archive - February 16, 2007

Vol 8, Number 4

PHA News February 16, 2007  
PHA News is an e-mail newsletter from the Pulmonary Hypertension Association covering PH related topics.

PHA News Editor - Sally Maddox skmaddox@bellsouth.net
Contributing Editors - PHA staff
reaching over 6000 subscribers
www.PHAssociation.org

PHA News is meant to give a picture of recent events and activities affecting the life
of the PH community. This compilation should not be viewed as endorsement of the
information provided or its accuracy.
Topics For This Issue
HEADLINES
--You Did It! Advocacy Successes for PH Research
--Upcoming Medical Conferences for Medical Professionals
--Graphic Designers Needed
--Free Materials Available Online

NEWS
--Lung Transplant with External, Artificial Lung Novalung
--Why PHARMA Must Go Hollywood

ANNOUNCEMENTS
--Pathlight Survey -- Tell Us How We're Doing
--Parents: Help PHA Help You

You Did It! Advocacy Successes for PH Research

PH community gathers to introduce the PH Research ActNHLBI Funds Millions of Dollars for PH Research Through Research Centers
Because of all your work garnering support for the PH Research Act, the National Heart, Lung, and Blood Institute (NHLBI) took notice of our cause and agreed to fund two Specialized Centers for Clinically Oriented Research (SCCORs) at Johns Hopkins University in Baltimore and the University of Colorado in Denver. These centers are similar to the “Centers of Excellence” called for in the PH Research Act. Each center will pursue multiple PH research projects, and the funding they receive from NHLBI over the next five years will total millions of dollars.

2007 Budget is 2 Victories in 1
Everything the PH community has done to develop relationships with Members of Congress is leading us to one tremendous victory after another! The 2007 funding resolution has passed Congress and been signed by the President, bringing increased money for research from both the NIH and the Department of Defense. Congratulations!

1. “Budget With A Heart” Brings a Valentine’s Day Success!
Thank you to the 277 PH patients and supporters who contacted their Members of Congress in the “Budget With A Heart” Campaign. On Valentine’s Day, your work paid off! Congress passed a funding resolution that provides Health and Human Service, Education and Labor programs with $2.3 billion more in funding than they received last year -- that’s $7 billion more than the President’s original budget proposal! The next day, the President signed the budget resolution, making it official. From the new funding, the National Institutes of Health will receive $620 million more than last year -- enough to support an additional 500 research grants.

2. PH Research Gains Further Support!
Pulmonary Hypertension is one of only twenty-two diseases and conditions eligible for funding this year by the Department of Defense (DOD) Peer Review Medical Research Program. Much of the list is made up of well known or relatively common conditions such as diabetes and childhood asthma. PH, on the other hand, is a little-known condition making a big impact. Its inclusion is a direct result of the PH community’s awareness-raising at the Congressional level and a significant victory on the road to a cure!

Get Involved in PH Advocacy

FOR MEDICAL PROFESSIONALS

March Medical Conferences Just Around the Corner!
Johns Hopkins University Medical Center and the University of California at San Francisco (UCSF) are both holding medical education conferences in March of 2007. The theme of the Hopkins conference is Emerging Concepts in PH while the UCSF conference will focus on childhood pulmonary vascular disease. CME’s will be offered for both events.
Learn more about these conferences and other events in the medical community

2005 PH Resource Network SymposiumPH Resource Network Symposium Online Registration Live!
The 2007 Symposium is in Arlington, Va. from October 11-13. PH Resource Network is the professional section of PHA for non-MD allied health professionals. First eligible 300 registrants free!
Learn more and register today!

Graphic Designers Needed

Have experience designing graphics for print or web? We need your help getting the attention our cause deserves. So much of what we do depends on getting the word out there, and the right graphic design can make a huge difference in how successful we are. Please consider volunteering some of your time to provide this critical support.

Heather Koczur and Christi Hetrick flank Jerry Paton as they receive outstanding volunteer awardsIf your experience is print, we consistently have projects that come up and need volunteers to be a part of our graphic design volunteer team. Project examples include brochures and fliers, logos for new PHA programs, t-shirts and signs for conferences, and much more. If you’re interested, please contact Christine at 301-565-3004 x114 or Christine@PHAssociation.org and she'll contact you as projects occur to see if you have the time. Projects are coming up all the time, so let us know whenever you’re ready to join our team.

We are also looking for web geeks who do website design. We’d like to put you in touch with our resident geek. We are looking for assistance with improving the website experience for our PH community. Get involved by contacting Diane at Diane@PHAssociation.org or 301-565-3004 x119.

Free Materials Available Online

PHA offers a number of free materials -- including membership and informational brochures, save the date cards, posters, and more -- in our online store. Order materials to put in your doctor's office, hand out at your next event, or circulate among your peers. We have fliers for patients and medical professionals alike.

Order free materials

NEWS

Lung Transplant with External, Artificial Lung Novalung
The lung transplant team at Toronto General Hospital, University Health Network used the Novalung, an external, artificial lung to keep the patient alive until a set of donor organs became available for transplantation. Read article

Why PHARMA Must Go Hollywood
The answer to stagnating R&D can be found in the creativity of the movie industry. Read article

ANNOUNCEMENTS

PathlightPathlight Survey -- Tell Us How We're Doing
For over a decade, Pathlight has been serving the PH community -- sharing success stories, breaking medical advances, and providing practical advice and hope for a cure. We want to be sure that the publication continues to meet the needs of our growing, diverse community. As a member of the PH community, Pathlight is your newsletter and we value your input. Please take a few minutes to let us know how well Pathlight meets your needs and how we can improve by completing our online survey.
Please take the Pathlight survey (should take no more than 10 min.)

Parents: Help PHA Help You
Are you a parent of a child with PH and live in the U.S.? PHA is working with a group of parent volunteers to understand the kind of services and programs that are most important for YOU, your children and your family. Please help us better understand the needs and wants of the U.S. PH pediatric community by participating in a brief research project that will be conducted online. You would login to a secure site, once a day for three days, at a time convenient for you, and share your thoughts and opinions. If you are interested in participating please contact Sarah Gawlitta at PHA at 301-565-3004 x127.


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