PHA News Archive - March 16, 2007

Vol 8, Number 6		March 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 6200 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 --TAKE ACTION: Help Improve Medicare Access for PH Patients --New Way to Support the Cause: In Honor of Our Lives --Autumn Medical Journal, Advances in PH, Available Online --AZ Spur-A-Cure Car Raffle and Dinner a Huge Success NEWS --Clinic Discovery May Help Sufferers of Lung Condition --Actelion Announces Positive Study with Bosentan (Tracleer) in CTEPH --WA Lung Transplant Recipient Aimee Blakiston is Continuing to Make Slow Progress a Month After Undergoing Life Saving Surgery ANNOUNCEMENTS --PHA Awards Two International Seed Grants --View Educational Videos Online --Pathlight Survey Ends March 31 - Tell Us What You Think --Register for PH Resource Network Symposium

TAKE ACTION

March/April Action Item Help Improve Medicare Access for PH Patients H.R. 1282, The Medigap Access Improvement Act, would require all states to offer Medigap policies to disabled recipients regardless of their age. Support this bill now! Did you know that Medicare benefits are different for individuals receiving Social Security Disability Insurance (SSDI) than they are for those over the age of 65? Many states offer Medicare recipients over age 65 additional assistance with coinsurance costs through Medigap plans but do not offer these plans to disabled recipients. Only 24 states offer this Medigap coverage to disabled recipients. The PH community is taking a stand — we support equal access to Medicare benefits for disabled and elderly recipients. You can help! Take action now to support the Medigap Access Improvement Act. Read Tips for Responding to Online Action Alerts Take Action

New Way to Support the Cause

In Honor of Our Lives Whether you are celebrating a wedding, birthday, anniversary, bar mitzvah or other milestone, consider including PHA in your festivities. By asking your guests to make donations to PHA in lieu of gifts or making a donation in honor of your guests in lieu of party favors, you will be supporting our collective cause and raising awareness of PH. In Honor of Our Lives is a great way to honor or remember the courage of PH patients in the fight against this terrible illness. Go online for more information and to see how others have used their life milestones to help support the fight against PH.

Autumn Medical Journal, Advances in PH, Available Online
	The Autumn issue of Advances in Pulmonary Hypertension is now available online. It includes highlights from the 2006 International PH Conference and Scientific Sessions. Read Autumn issue New! Also available online is a searchable index of articles from past issues of Advances listed by issue. View Advances Index

Arizona Spur-A-Cure Car Raffle and Dinner a Huge Success
	The Arizona Spur-A-Cure car raffle and dinner was a huge success, selling more than 750 raffle tickets and garnering six event sponsors for a net profit of around $30,000! The winning ticket number drawn Saturday, Feb. 24 belonged to an individual in Phoenix, Ariz. who chose a Jeep Wrangler as her car choice. Learn more about the event

NEWS

Clinic Discovery May Help Sufferers of Lung Condition Future sufferers may fare better because of a discovery at the Cleveland Clinic that might allow earlier detection and, therefore, more-effective treatment. Read article Actelion Announces Positive Study with Bosentan (Tracleer) in CTEPH First-Ever Placebo-controlled Study in Inoperable Chronic Thromboembolic Pulmonary Hypertension - Primary Endpoint of Reduction in Pulmonary Vascular Resistance Met - Six-Minute-walk Test Unchanged - Significant Effect on Dyspnoea Score and Biological Disease Marker. Read article WA Lung Transplant Recipient Aimee Blakiston is Continuing to Make Slow Progress a Month After Undergoing Life Saving Surgery DOING WELL: Aimee Blakiston, 17, is making a slow recovery but is doing well after a lifesaving double lung transplant last month in Royal Perth Hospital. Read article

ANNOUNCEMENTS

PHA Awards Two International Seed Grants PHA is pleased to announce the first two recipients of its International Seed Grants. The International Seed Grant Program was announced in 2006 and is designated to help PH associations from around the world to implement new ideas and activities, build visibility and understanding of PH in their national communities, educate patient and medical professional populations, and/or accomplish other appropriate projects and programs. Grants of $10,000 each have been awarded to PHA Israel for a project entitled: “Professionally Facilitated Emotional Support Group” and to the Mexican PHA for their membership outreach project. Congratulations to both associations. For more information on PHA’s International Seed Grant Program please contact Angie at Angie@PHAssociation.org or 301-565-3004 x120. View Educational Videos Online "Understanding and Treating Pulmonary Arterial Hypertension" with Lewis Rubin, M.D., Professor of Medicine at the University of California, San Diego PBS video "Healthy Body, Healthy Minds" on Pulmonary Hypertension that the Pulmonary Hypertension Association assisted with Pathlight Survey Ends March 31 - Tell Us What You Think 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.) Register for PH Resource Network Symposium 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!

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