PHA News -- January 4, 2008

PHA is launching two distinct surveys that seek to learn how well PHA's current programs and services are meeting your needs, what else you'd like to see PHA offer, and your general impressions about the organization.

Patients, family members and friends survey:
please set aside about 15 minutes to complete your survey

Medical professionals and researchers survey:
we are asking for about 10 minutes of your time

PHA is grateful to Camm Epstein for assisting PHA in developing and analyzing the two surveys. Camm and Sue Epstein's 12-year old daughter, Danielle, is a PH patient and Camm has provided a significant amount of expert know-how to PHA free-of-charge.

If you have any questions about the surveys, please contact PHA Vice President Adrienne Dern at Adrienne@PHAssociation.org or 301-565-3004 x110.

SAY "THANK YOU!" TO PH HERO CONGRESSMAN TOM LANTOS

As you may have heard, long-time PH advocate, Congressman Tom Lantos (D-CA), recently announced his decision not to run for re-election. He will retire at the end of 2008. Tom will turn 80 this year, so his retirement is not wholly unexpected. However, it comes much sooner than anyone would have liked due to his diagnosis with cancer of the esophagus.

A detailed story about Congressman Lantos' life, political career, and decision to retire is available in the San Francisco Chronicle: Detailed Story about Congressman Lantos

When Tom Lantos' granddaughter, Charity, was diagnosed with pulmonary hypertension, he responded by joining Congressman Kevin Brady (R-TX) as a passionate advocate for the PH community in Congress. Together, Congressmen Lantos and Brady have introduced the PH Research Acts of 2003, 2005 and 2007, spoken at numerous PH events, and committed themselves and their staff to making a difference in the fight against PH any way they can. This fall, the passion and dedication that Tom expressed in his remarks at the PH Resource Network Lobby Day and PHA's Congressional Luncheon moved many attendees to tears.

With Tom's retirement, the PH community will lose a champion in Congress. However, nothing can diminish the tremendous strides that PH advocacy has made thanks to his unfailing leadership during the previous five years.

Please take a few minutes to thank this PH hero for all he has done

PHA RECEIVES FEDERAL FUNDS FOR EDUCATION AND OUTREACH

It's official! Thanks to all of your phone calls and e-mails to Members of Congress regarding the fiscal year 2008 budget, the PH community has achieved a significant budget victory. During the last week of December, President Bush signed an omnibus appropriations bill that provides $195,000 to the "Pulmonary Hypertension Association, Silver Spring, MD for public education and outreach." This allocation is part of the Centers for Disease Control and Prevention Budget. Congratulations!

MOTHER FINDS AND GIVES SUPPORT BY JOINING PHA

When one-year-old Ava LaBarge was diagnosed with PH, the doctors told her parents to enjoy the time they had left with her because there wouldn't be much. That night, Ava's mother, Mitzi, got on the computer in the hospital's lounge to research PH. She found the PHA website and began to wonder if it was possible that Ava's prognosis might not be so grim. That night, she contacted Jeannette Morrill, the PHA Support Group Leader in Maine, who referred the family to a PH center. Today, Ava is a happy two-year-old who takes life by the horns.

Mitzi became a member of PHA to connect with others, learn more and find hope. Mitzi uses the PHA message boards and e-mail listservs to talk with other parents who are dealing with similar issues. She was so moved by the support that she gets from the online community that she gives back by talking on the phone and online with parents of newly diagnosed patients. She is also helping PHA develop programs for school-aged children.

PHA believes that no one should fight this disease alone. We encourage you to join us in the fight for the cure by becoming a member of PHA.

Join PHA through Secure Online Form
or contact Andrew at 301-565-3004 x116

PH PATIENT THERESA STAHL USES MANY AVENUES TO RAISE AWARENESS IN THE FIGHT FOR A CURE

Theresa Stahl's local paper, the Crescent News, had done an article on her when she was very ill three years ago so she knew they would be a great paper to contact about raising awareness about PH during Awareness Month. She called the local paper's health editor and requested they do another article on PH. She was interviewed on Nov. 7 and the article was published on Nov. 11. Read article

Theresa also contacted her local Mayor's office in Defiance, Ohio, and requested a proclamation to recognize November as PH Awareness Month for the city. Using information provided by PHA, she dropped off a sample proclamation and information about PH and the Mayor agreed. She attended the official proclamation signing with her physician and another local patient.

That's not all! Read more about what Theresa did this past Awareness Month

SOUTHWEST VIRGINIA PH SUPPORT GROUP CELEBRATES
The Southwest Virginia PH Support Group Christmas Banquet was a huge success. Please take a look at the cheerful pictures of friends and family who attended the banquet. View Pictures

PH IN THE NEWS

Actelion to Start Phase III Study on Hypertension Drug Actelion-1
(Thomson Financial News) Zurich, Switzerland -- Actelion Ltd said it is starting a phase III trial on its hypertension drug Actelion-1. The Swiss pharma firm said the study is designed to evaluate the safety and efficacy of the drug in delaying disease progression and mortality in patients with pulmonary arterial hypertension.
Read article

Actelion Pharmaceuticals US, Inc. Announced Results of a Recent Harris Interactive Survey

PRNewswire -- Actelion Pharmaceuticals US, Inc. announced results of a recent Harris Interactive(R) survey, showing that an overwhelming majority of Tracleer patients enrolled in Sure Steps find the patient support program valuable, and feel that their knowledge of pulmonary arterial hypertension (PAH) and Tracleer have improved due to the program. The Sure Steps program, part of Actelion's PAH Pathways(TM) service and support program, is a support and education program available to all PAH patients on Actelion's PAH products, Tracleer and Ventavis(R) (iloprost) Inhalation Solution.
Read Article

Stories of Survival
TheRecord.com -- Local residents share stories of their battles with extraordinary health problems and rare conditions.
Read Article

NEW ONLINE CHAT TOOL PROVIDES MORE FUNCTIONALITY

The PHA online support group chats are even better with a new chat tool. The new tool is a lot of fun and allows for some fun features people have suggested, such as emoticons and the ability to choose a user image. I think the best feature is the HELP box at the bottom that tells you what each feature is as you hover over it with your mouse.

Another new feature is that all regularly scheduled online support group meetings are listed as separate chat rooms for you to enter so you know you're in the right place at the right time. It also allows for users to chat in the general PHA Foyer as well as have a private chat with another user.

Check out the new tool and the online support group chat schedule

ANNOUNCEMENTS

COME READ AND LEARN ABOUT THE LATEST ADVANCES IN PH RESEARCH!
The Summer and Autumn issues of Advances in PH medical journal are now available online. Read Summer Issue: Surgery and PAH: Considerations, Guidelines & Outcomes Read Autumn Issue: Pulmonary Arterial Hypertension in Adults with Congenital Heart Disease

MAKE A NEW YEAR'S RESOLUTION THAT YOU'LL KEEP

Join PHA's Sustainers Circle

Why not start the New Year off by joining PHA's Sustainers Circle, our monthly giving program? By giving PHA permission to collect a monthly payment from your credit card in the amount you set, you help us keep hope alive for PH patients and their loved ones.

PHA maintains a host of programs that benefit patients, their family members and the medical professionals who treat them. We fight day in and day out in our search for a cure because pulmonary hypertension never takes a break -- and we don't either.

Join PHA's Sustainers Circle