PHA News Archive - November 13, 2006

Vol 7, Number 21		November 13, 2006
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 5000 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
	PH Awareness Month Campaign Highlight PHAWARE CAMPAIGN MAKES TELLING YOUR PH STORY TO THE MEDIA EASY --Media coverage about PH leads to increased awareness, earlier diagnosis, and more effective treatment of the illness--and it's easy. PH CONGRESSIONAL LUNCHEON WEDNESDAY, NOV 15 --Last chance to help us make this year's Luncheon a success. We need your help whether or not you live in the DC area. ASK A PH SPECIALIST --Pathlight will now feature a question from our PH community and the answer from a PH specialist. PHA LAUNCHES NEW & IMPROVED LEGACY PLANNING WEB SECTION --Easy-to-use resources to help individuals navigate the many aspects of gift planning. REGISTER FOR NIH PH CONFERENCE --December 7-8, Bethesda, Maryland NEWS --View 30 Minute PBS Television Show "Identifying Pulmonary Hypertension" Online --Advances in Pulmonary Hypertension Testing --A Wedding to Remember --Pulmonary Hypertension Discrimination: Mortality Highest Among African American Women ANNOUNCEMENTS --PH-Treating Healthcare Professionals - Join one of our professional sections for medical professionals today! Patients - Encourage your medical practitioners to join. --Raise Awareness by Wearing the Official PHA T-shirt and Baseball Cap

Please Support PHA in the Combined Federal Campaign

PHA is #0212

PH Awareness Month Campaign Highlight PHAWARE CAMPAIGN MAKES TELLING YOUR PH STORY TO THE MEDIA EASY

Have you ever read, heard, or seen a news story and thought, I could do that? Now’s your chance! Through the PHAware Campaign, PH community members have the opportunity to share their story with the media. Media coverage about PH leads to increased awareness, earlier diagnosis, and more effective treatment of the illness--and it's easy. You already have the most important tool, your story! Here is what a couple PH patients have said about putting their story in the public eye: Sharing my story was very easy. I called the local newspaper and said, 'Have I got a story for you.' When they did call to set up an interview it went very smoothly. ...PHA helped me connect with the media, I was sent all sorts of information that I could pass on. --Merle Reeseman, PA After publication of the two stories about me in the local newspapers, we had such great response from the community, and acquired many new PHers who had no knowledge of support in the area. The articles sparked interest near and far. --Cheryl Massaro, CO Sound intriguing? PHA will provide you with a step-by-step guide for contacting the media, including sample scripts and talking points. We'll also send you a packet of information to share with reporters, including a CD-ROM explaining how PH impacts the body. For more information about PH Aware contact Dayle at 301-565-3004 x113 or awareness@PHAssociation.org.

PH CONGRESSIONAL LUNCHEON WEDNESDAY, NOV 15

Last chance to help us make this year's Luncheon a success. We need your help whether or not you live in the DC area. PHA's 3rd Annual Congressional Luncheon will take place on November 15 during PH Awareness Month. If you or someone you know will be in the DC area, you can help us by attending the event and inviting your families and friends. We also need the PH community throughout the nation to invite their Members of Congress. Please invite your Senators and Representative to this important event. Learn more about how you can help with the Congressional Luncheon RSVP for the Luncheon by contacting Katie at 301-565-3004 x109 or Katie@PHAssociation.org.

ASK A PH SPECIALIST
	Pathlight, PHA's newsletter, will now feature a question from our PH community and the answer from a PH specialist. So send us your burning questions, keeping in mind doctors can only give general advice not specific to your case. Send submissions to Rachel at medical@PHAssociation.org or call her at 301-565-3004 x104.

PHA LAUNCHES NEW & IMPROVED LEGACY PLANNING WEB SECTION
	Easy-to-use resources to help individuals navigate the many aspects of gift planning, such as donor stories, giving opportunities described in lay terms, and tools to calculate tax savings. Learn more

REGISTER FOR NIH PH CONFERENCE

Evolution of Pulmonary Hypertension: Emerging Diseases and Novel Therapeutics December 7-8, 2006 Natcher Conference Center National Institutes of Health Bethesda, Maryland five scientific sessions, award-winning abstracts, and two sessions to view 74 posters Main meeting topics: Pathology and current therapy PH and emerging diseases Antiproliferative agents in advanced disease Future research opportunities Future management of PAH Pre-registration is required. This meeting is free. Logistical information, speaker bios, and more

NEWS

View 30 Minute PBS Television Show "Identifying Pulmonary Hypertension" Online The recently produced 30 minute television show "Identifying Pulmonary Hypertension," which PHA has been working on for the last 10 months or so is now being dowloaded for play by various PBS stations. It is also viewable from the producer's website if you'd like to see it...we've been getting great comments. While broadcast has begun in October, it is expected to increase in November during Awareness Month, with the stations having access to the program for two years. We feel the show - part of the Healthy Body, Healthy Mind series - covers both the nature of the illness and the community being built through PHA to combat it. Our thanks to Actelion for supporting this program. View video Advances in Pulmonary Hypertension Testing A study published in the American Journal of Respiratory and Critical Care Medicine has revealed the details of a new form of testing for pulmonary hypertension. Patients with pulmonary hypertension underwent a transthoracic echocardiogram after heart catheterisation. Read article A Wedding to Remember Rare disease doesn't stop 'Hollywood' couple from having it their way on their special day. Read article Pulmonary Hypertension Discrimination: Mortality Highest Among African American Women African-American women have the highest mortality rate for idiopathic pulmonary arterial hypertension (IPAH), according to new research. Read article

ANNOUNCEMENTS

PH-Treating Healthcare Professionals - Join one of our professional sections for medical professionals today! PH Resource Network For nurses, nurse practitioners, physician assistants, pharmacists, respiratory therapists, technicians and other allied health professionals who work in the field of PH. PH Clinicians and Researchers (PHCR) For physicians and MD/PhD-level researchers who work in the field of PH. Patients: Help assure that your healthcare providers are up-to-date on the latest advances in PH and are part of the PHA community. Encourage them to join our medical membership sections today! Members of PHA's professional sections are on the front-line in the battle against pulmonary hypertension and serve as the medical support network for people dealing with this devastating disease. As part of the Pulmonary Hypertension Association, PH Resource Network and PHCR are dedicated to enhancing communication, professional development, research and education among PH medical professionals. Raise Awareness by Wearing the Official PHA T-shirt and Baseball Cap PHA's Official T-shirt This high-quality, pre-shrunk, 100% cotton t-shirt has the PHA logo on the left chest. The t-shirt back highlights PHA's mission and goals, with the words "Hope, Support, Advocacy, Education, Awareness, Community, Cure" superimposed over a pair of lungs. The sleeve carries a sponsor logo from Encysive Pharmaceuticals. PHA's Official Baseball Cap One size fits all, adjustable strap baseball cap in khaki with blue trim and PHA's logo on the front. The back has a sponsor logo from Actelion. Order your official PHA t-shirts and baseball caps today!

Patients | Medical Professionals | Caregivers | Media

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs. Questions about the site? email web@PHAssociation.org Pulmonary Hypertension Association 801 Roeder Road, Ste. 400 Silver Spring, MD 20910 Copyright © 2008 Pulmonary Hypertension Association Read our privacy policy.

For optimal viewing of PHAssociation.org we recommend the following:

PC : Windows running Internet Explorer 5.5 or higher Macintosh: Internet Explorer 5.2 or higher free download from Microsoft.com   Macromedia Flash Player free download from Macromedia.com   Adobe Acrobat Reader 6.0 or higher free download from Adobe.com