PHA News Archive - December 15, 2006

Vol 7, Number 23		December 15, 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 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.

Please note that the next issue of PHA News will be January 5 due to the holidays.

		Topics For This Issue
	HEADLINES --PHA News Now Reaches Over 6000! --27 New Our Journeys Stories Posted, Read Stories from the PH Community --Medicare Part D Open Enrollment Deadline Dec. 31 --Read PHA Annual Report and Consider Giving --AZ Spur a Cure for PH Car Raffle, Win Car of Your Choice --PH Research Program Deadlines Approaching NEWS --NIH PH Conference a Success --EPIX Pharmaceuticals Presents Findings from PRX-08066 Clinical Trials at National Institutes of Health Pulmonary Hypertension Meeting --Engineered Cells Could Cure Rare Heart Disease --Actelion-1 - First Tissue-Targeting Endothelin Receptor Antagonist - in Phase III for Pulmonary Hypertension --FDA Approves Encysive Tests on TBC3711 --Federal Agencies Finalize Rules on Health Nondiscrimination ANNOUNCEMENTS --Revamped Web Section Makes it Easy to Support PHA --Include Your PH Story in Your Holiday Cards --PHA 2007 Calendar On Sale - Makes a Great Gift -- Make Your Holiday Cards Special This Year With PH Holiday Cards --Check out Awareness Month Highlights on our Website

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PHA NEWS NOW REACHES OVER 6000!
	Because of your great work forwarding this newsletter on to your friends, PHA News now reaches over 6000 subscribers, 6017 to be precise. Keep up the good work. You can use the "Forward to a Friend" link at the bottom of this email to share PHA News with your fellow PHers, family, and friends. Only with your help can we spread awareness about PH. Not subscribed to this newsletter? Subscribe now

27 NEW OUR JOURNEYS STORIES POSTED

Twenty-seven new stories have been posted by our community about their PH journeys to the webpage of PHA's Our Journeys campaign. We thank these PHers for sharing their experience. To newly diagnosed patients, these stories provide hope. They also provide serious but welcome information about what it means to live with this illness. Journeys stories also touch the hearts of political leaders, media reporters, and good-hearted people who have never heard of PH. Journeys stories create allies in our fight for a cure. Read Our Journeys stories and add your own to voice of the community.

MEDICARE PART D OPEN ENROLLMENT DEADLINE DEC. 31

The Medicare Part D (Prescription Drug Plan) has open enrollment for 2007 from Nov. 15 to Dec. 31. During open enrollment you can: enroll in a plan if you are newly eligible for Medicare Part D, enroll in a plan if you decided not to enroll last year, or change your Medicare Part D plan. New to Medicare Part D? View "Introducing Medicare Part D" slideshow For additional information and tools to help you find a Medicare Part D plan that's right for you, go to the Center for Medicare and Medicaid Services website.

READ PHA ANNUAL REPORT AND CONSIDER GIVING
	Read PHA's 2006 Annual Report and end of the year letter about this year's accomplishments of the PH community, and please consider donating to PHA. Read end of year update

AZ SPUR A CURE FOR PH CAR RAFFLE

Want to support PH research and have a chance to win a car of your choice?! A group of PH patients and their families in Phoenix, Ariz. are organizing the Arizona Spur-A-Cure Car Raffle: a raffle where the winner picks their choice of cars. With a maximum of 5,000 tickets being sold, your chances of winning are greater than in Vegas or the lottery! Tickets are being sold 1 for $50 or 3 for $100. Winner does not need to be present at the drawing, but they are responsible for picking up the vehicle or the cost of shipping. For more information please visit www.CurePH.com.

PH RESEARCH PROGRAM DEADLINES APPROACHING

The Pulmonary Hypertension Association offers three major research awards each year to support cutting-edge research on pulmonary hypertension. By sponsoring researchers at the forefront of the field, PHA actively ensures a brighter future for those with PH and supports the fight for a cure. If you are a patient or caregiver, please let your physician know about PHA's research grant program and how they can obtain more information. Deadline for two of the programs are quickly approaching so go to our website to learn more! Also listed on this page are other PH research opportunities. Please note that Actelion Pharmaceuticals is extending the Letter of Intent deadline for its Young Investigators grant to Dec. 31, 2006. The grants are awarded up to $75,000 for a 1-year mentored research protocol in the endothelin receptor system in pulmonary vascular disease. Up to 8 grants are available. Full details PHA's research program is funded by dedicated volunteers who plan fundraisers and special events. Learn more about how you can hold a special event or fundraiser

NEWS

NIH PH Conference a Success The National Institutes of Health hosted a PH conference on December 7-8, entitled, "Evolution of Pulmonary Hypertension: Emerging Diseases and Novel Therapeutics Meeting." This exciting, first-time event attracted almost 500 attendees, making it one of the largest gatherings of PH physicians to date. The event featured a variety of well-known speakers, including many members of the PHA's Scientific Leadership Council. A video cast of the meeting is available online at http://videocast.nih.gov. A pod cast will be available at the same URL in about two weeks. EPIX Pharmaceuticals Presents Findings from PRX-08066 Clinical Trials at National Institutes of Health Pulmonary Hypertension Meeting Data from these trials provide support for the ongoing Phase 2a clinical trial of PRX-08066 in patients with pulmonary hypertension (PH) associated with chronic obstructive pulmonary disease (COPD). Read article Engineered Cells Could Cure Rare Heart Disease Toronto researchers say they have developed a promising new experimental gene and cell therapy for a rare, devastating cardiovascular disease that predominantly affects young women. Read article Actelion-1 - First Tissue-Targeting Endothelin Receptor Antagonist - in Phase III for Pulmonary Hypertension Actelion Ltd announced today that it has initiated a comprehensive Phase III program for Actelion-1, the first tissue targeting endothelin receptor antagonist (ERA). Read article FDA Approves Encysive Tests on TBC3711 The Food and Drug Administration cleared Encysive Pharmaceuticals to resume clinical studies of TBC3711, the pharmaceutical company’s new endothelin receptor antagonist. Read article Federal Agencies Finalize Rules on Health Nondiscrimination The U. S. Department of Labor's Employee Benefits Security Administration (EBSA), Internal Revenue Service and Department of Health and Human Services announced the publication of final rules that provide guidance in complying with the nondiscrimination provisions of the Health Insurance Portability and Accountability Act (HIPAA). The final rules also provide guidance on the implementation of wellness programs. Read article

ANNOUNCEMENTS

Revamped Web Section Makes it Easy to Support PHA The donation section of PHA's website has a fresh new look and easy access to great information about the many opportunities for supporting PHA's programs and services. Whether your thing is writing a letter to your family and friends, spreading awareness while giving your co-workers the opportunity to wear jeans, leaving a legacy to PHA through planned giving, or organizing an event, we have all the resources you need at your fingertips. Check it out Include Your PH Story in Your Holiday Cards Circle of Friends is a letter writing campaign which empowers you to share your PH story with your family and friends while raising money for PHA at the same time. This campaign not only creates awareness, it gives friends and family members an opportunity to show their support by making a donation to PHA in your honor. "It is amazing to see how generous the human spirit is when there is a time of need." --Kerry Bardoff on her $30,000 Circle of Friends Campaign During this holiday season, when family and friends are brought together in a time of giving and receiving, what better gift to receive than a gift of hope for so many? By including a letter in your holiday cards that tells the story of your experience with PH and requests a donation to PHA in your honor, you will be giving your family and friends the opportunity to experience the true meaning of the holiday season. PHA's Circle of Friends program makes it easy for you to do that. Contact giving@PHAssociation.org for more information, including sample letters and tips on making your campaign a success! PHA 2007 Calendar On Sale - Makes a Great Gift Something new for the holidays! Order your calendar while supplies last. In addition to the great photos of PHers that illustrate our "community of hope," each month of the calendar features information on services and programs available from PHA and tips for steps to take when someone is diagnosed. Makes a great gift for your family and friends. Place your order today! Make Your Holiday Cards Special This Year With PH Holiday Cards The young artists who produced these cards are children diagnosed with PH or their siblings. Purchase holiday cards Check out Awareness Month Highlights on our Website We have more reports from PH Awareness Month activities. Check out the highlights on our website. If yours isn't there we'd love to hear from you. Let us know what happened and send us any pictures you might have. Send submissions to Katie at Katie@PHAssociation.org. We'd love to hear from you year round so keep your reports coming! Read AM reports

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