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PHA News Archive - March 2, 2007

Vol 8, Number 5

PHA News March 2, 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
--Million Dollar Gifts Help Secure PHA's Future
--Note from PHA's SLC on Recent CDC Statement on Long-term Intravenous Therapy
--PH Fact Sheets Readily Available in New Web Section
--New Volunteer Opportunities Available

NEWS
--Understanding and Treating Pulmonary Arterial Hypertension
--Gilead's New Drug Application for Ambrisentan Receives Priority Review Status

ANNOUNCEMENTS
--March Medical Conferences for Medical Professionals Just Around the Corner!
--PH Resource Network Symposium Online Registration Live!
--Pathlight Survey -- Tell Us How We're Doing

Million Dollar Gifts Help Secure PHA's Future

PHA research and patient-serving programs to benefit from endowments

graphThe PH community's fight against pulmonary hypertension got a huge boost early in 2007 when PHA received the two largest gifts in the organization's history. In January, Oracle announced a one million dollar grant to support the ongoing funding of one of PHA's Mentored Clinical Research Awards. Just one month later, United Therapeutics honored PHA with its second million dollar grant, in support of PHA's Support Group Leadership Training Institute.

Endowment gifts enable PHA to perpetuate programming by providing a sum of money -- by leaving the original gift untouched -- that accrues investment income sufficient to fund annual program costs. For PHA, these endowments, and others that may follow, ensure that the PH community's research and patient support goals remain fully funded until we find a cure. Over time, PHA hopes to endow additional research and program activity with the support of other groups and individuals inspired to bring about significant progress in the fight against pulmonary hypertension.

Read full article

Note from PHA's Scientific Leadership Council on Recent CDC Statement on Long-term Intravenous Therapy

The following position statement was adopted on February 23, 2007. You are encouraged to pass this message on to your PH-treating medical professionals...

The Scientific Leadership Council (SLC) notes the observation that patients on long-term intravenous therapy are susceptible to bloodstream infections caused by a broad range of organisms. The Centers for Disease Control and Prevention (CDC) report suggests a hypothesis that different patient profiles may be subject to higher risk of various types of infections. The SLC considers the CDC document to be a hypothesis generating report which does not permit definitive or specific conclusions at this time. Therefore, the SLC supports the following:

  1. Further appropriately designed studies are required to determine the validity of the hypothesis raised by the current document.
  2. Pending rigorous studies, physicians should be mindful of the range of possible gram negative and gram positive infectious organisms in patients with long-term central catheters and initiate appropriately broad spectrum antibiotics in patients with suspected bloodstream infections until culture results and antibiotic sensitivity are known.
  3. Choice of specific parenteral prostacyclin agents, as well as all pulmonary vascular targeted therapy should continue to be based on a global assessment of efficacy, risk, expense and feasibility of each agent in each individual patient’s clinical context.

View the CDC presentation (PDF)

PH Fact Sheets Readily Available in New Web Section

From consensus statement and treatment information to PH tips, genetics testing and FAQs, we've consolidated all this useful information and more into a new fact sheets section in our website to make them easier to find.

Check out the great educational materials available

PH Fact Sheets Readily Available in New Web Section

Local volunteers enjoying PHA reception
It’s not all work! Local volunteers
share a good time at a PHA event
in Silver Spring, Md.
Volunteer Signup

New Volunteer Opportunities Available
PHA believes that every patient has the right to do as much -- or as little -- as they are willing and able in the fight against the illness that has entered their lives. Our obligation is to create the opportunities for that involvement.

We have some specific volunteer opportunities you can express interest in, from reporting on activities in your area and organizing events to surfing the website and writing. We can also create a volunteer role to meet your specific skills and interests. Whether you want to work behind the scenes or have direct contact with PH patients, we have an opportunity available for everyone with the time and interest.

If you would like to volunteer to further the work of PHA in helping PH patients and serving the PH community, please tell us about your skills and interests. Fill out the online form or contact us at volunteer@PHAssociation.org or 301-565-3004 x115.

Volunteer Signup Online Form

Featured Volunteer Opportunity: 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. 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.

NEWS

Understanding and Treating Pulmonary Arterial Hypertension
Dr. Lewis Rubin was recently on the BRAVO network giving information about PAH. Lung Rx and United Therapeutics were the sponsors for making this DVD. Read article

Gilead's New Drug Application for Ambrisentan Receives Priority Review Status
Gilead Sciences, Inc. announced that the U.S. Food and Drug Administration (FDA) has accepted for filing and granted a Priority Review for the company's New Drug Application (NDA) for marketing approval of ambrisentan (5 mg and 10 mg) for the once-daily treatment of pulmonary arterial hypertension. Read article

ANNOUNCEMENTS

March Medical Conferences for Medical Professionals 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!

Pathlight

Pathlight 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.)


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