PHA News Archive - August 21, 2006

Vol 7, Number 15		August 21, 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
reaching over 5000 subscribers

www.phassociation.org

PHAnews 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
	VISIT YOUR MEMBERS OF CONGRESS DURING AUGUST RECESS --Support the PH Research Act SPEAKERS ANNOUNCED FOR FREE REGIONAL MEDICAL EDUCATION SESSIONS for Medical Professionals, Patients, and Families --Orange County (CA), Dearborn (MI), Charlotte (NC), Pittsburgh (PA), Philadelphia (PA), Houston (TX) PH PARENTS PROPOSE CHILDREN WITH PH MEETING AT DISNEY WORLD NIH MEETING ON PH IN DECEMBER NEWS --The Lungs Have Their Own Blood Pressure --Encysive's Thelin for PAH cleared in EU ANNOUNCEMENTS --Tons of New Reports on PHA Special Events --New Conference Resources Available: List of Award Winners and Two New Conference Stories --New Position Created: Special Projects Coordinator Job Opening --PH Heart Pins on Sale

VISIT YOUR MEMBERS OF CONGRESS DURING AUGUST RECESS

Support the PH Research Act It's the month of August, and that means district visit time! Members of Congress are in their home state offices for the August recess. This makes it the perfect time to share your PH story and ask them to support the PH Research Act. Whenever members of the PH community work together and ask their elected officials to support the PH Research Act, we make progress. Together, we are making a difference! You don't have to be a professional lobbyist or have ever contacted your Member before. Hearing someone's personal story makes a huge impact. Don't forget, Members listen to their constituents because they work for you! It's easy and fun, and we're here to help, so contact us today! For more information about scheduling a district visit for you or your support group, contact Katie Kroner at advocacy@PHAssociation.org or 301-565-3004 X109.

SPEAKERS ANNOUNCED FOR FREE REGIONAL MEDICAL EDUCATION SESSIONS

for Medical Professionals, Patients, and Families Sponsored by the Pulmonary Hypertension Association and the Univerity of Michigan Medical School September 16 - Orange County, CA Speakers include: Dr. Richard Channick, Dr. Jeremy Feldman, Dr. Rajan Saggar, Dr. Nick Kim, Elaine Furst, RN, Dr. Daniel Furst, PHA President Rino Aldrighetti September 30 - Dearborn, MI Speakers include: Dr. Vallerie McLaughlin, Dr. Hector Cajigas, Dr. Fancisco Soto, Dr. James Seibold, Acting Exec Dir Scleroderma Fdn Frannie Waldron, Robert Phillips, PhD, PHA Vice President Adrienne Dern October 7 - Charlotte, NC Speakers include: Dr. Michael McGoon, Dr. Kristin Highland, Dr. Terry Fortin, Dr. Donald Elton, Acting Exec Dir Scleroderma Fdn Frannie Waldron, Dr. Joseph Shanahan, William Robiner, PhD, PHA Vice President Adrienne Dern October 14 - Pittsburgh, PA November 4 - Philadelphiam PA November 4 - Houston, TX Learn more and register today!

PH PARENTS PROPOSE CHILDREN WITH PH MEETING AT DISNEY WORLD

Spearheaded by two PH familes involved with PHA initiatives, a growing group of pediatric pulmonary hypertension patients (preschoolers, big kids and teens) and their families are planning to meet at Disney World in Orlando, Florida from February 16 through 19. We would like to extend an invitation to all families with children with PH to join us. This meeting will provide children and their families opportunities to socialize and have fun during the day. Evening meetings will enable parents to plan efforts that will enhance support, education, advocacy, and awareness for the pediatric pulmonary hypertension community. Efforts are being made to secure limited funding for financial aid to families requiring assistance, group activities, a hospitality suite and a conference room. If your family is interested in joining other PH families at Disney World, please contact Sue Epstein at (518) 587-7810 or sue@epsteinresearch.com. Please indicate if your family would require financial assistance in order to participate as well as your willingness to join this event's committee. Sue will also answer questions you may have about the plans that are underway.

NIH MEETING ON PH IN DECEMBER
	Evolution of PH: Emerging Diseases & Novel Therapeutics Meeting for medical professionals, patients, and families National Institutes of Health Bethesda, MD December 7-8, 2006 Abstracts Due: 9/22/06 includes travel awards more info: www.strategicresults.com/ph

NEWS

The Lungs Have Their Own Blood Pressure DEAR DR. DONOHUE: In April of this year, my doctor told me that I had high blood pressure in my lungs. I have never heard of this, and neither have others I have talked to. On the day he told me that, my blood pressure was 92/66. The following month, it was 95/70. I believe these are good readings. Your answer will be appreciated. -- V.S. read article Encysive's Thelin for PAH cleared in EU Encysive said its pulmonary arterial hypertension drug Thelin has been approved in Europe. The company said its new treatment was cleared for the European market to treat patients with pulmonary arterial hypertension to improve exercise capacity. Encysive said it would launch the drug first in the United Kingdom and Germany, followed by introduction in the other European Union member states. read article

ANNOUNCEMENTS

Tons of New Reports on PHA Special Events Read reports on PHA events and view pictures New Conference Resources Available: List of Award Winners and Two New Conference Stories Photos, speeches, abstracts, videos, reports from participants, award winners, and more. check them out New Position Created: Special Projects Coordinator Job Opening learn more PH Heart Pins on Sale Wear a symbol that aptly characterizes PHA's community of hope. Spur others to action with the "Help Cure PH" message. Actual size 3/4in x 3/4in. Help promote PH awareness.

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