PHA News
In This Issue
PHA Conference Registration Opens Jan. 13
Unite on the Path to a Cure
Connecting with People Like You Just Got Easier
Medicare Part D Transcript Available
It's Not Too Late to Avoid Holiday Weight
New Research Awards Announced
PH in the News
PAH Clinical Trials Debates Planned for March
Quick Links
Donate Now
Sustainers Circle - Monthly Gift
Upcoming Events
 3rd Annual A Cure for "Five Pennies," Daddy's Little Girl
Jan. 23, 2010
Schaumburg, Ill.
The Woodlands Crawfish Festival
March 27, 2010
The Woodlands, Texas
2nd Annual Scramble For A Cure April 17, 2010
Las Vegas, Nev.
4th Annual Spur a Cure for PH
April 24, 2010
Phoenix, Ariz.
PHA's 9th International PH Conference and Scientific Sessions
June 25-27, 2010
Orange County, Calif.
Vol 10/Number 25 December 18, 2009
PHA logoPHANews Editor - Sally Maddox
Contributing Editors - PHA staff
Reaching over 6,500 subscribers
See you next year!
PHANews is taking a break. Look for your next issue on Jan. 8, 2010. Until then, have a safe and happy holiday season!

Conference 2010: Riding the Wave to a Cure

Beginning Wed., January 13, 2010, you will be able to register for PHA's 9th International Pulmonary Hypertension Conference and Scientific Sessions, Riding the Wave to a Cure. The 2010 International PH Conference, which takes place June 25-27 in Garden Grove, Calif., will offer something for everyone with:

  • More than 50 educational sessions for patients and caregivers
  • More than 120 PH experts
  • Continuing medical education opportunities for medical professionals
  • And much more!

Check your mailbox soon for the Winter 2009 issue of Pathlight or Advances in Pulmonary Hypertension, which will include a registration brochure. If you would like registration brochures mailed to you, please email or call the PHA office at 301-565-3004.

To receive Conference updates in your inbox, join the Conference Alerts email list!

Path to a Cure ClimbersPath to a Cure Donations Doubled

How would you like to turn $1 into $2, or $1000 into $2000?  Well, thanks to the Actelion Path to a Cure Matching Fund, you can!  Raising funds to support PH research and PHA's patient-serving programs has never been easier.

As supporters of our Path to a Cure team's mountain climb and the community's movement behind their efforts, Actelion has created a generous matching fund to raise awareness of PH and critical funds for PHA. Actelion will match up to $50,000 of funds raised in support of the team through direct donations, online fundraising and Unity Walks.

The Path to a Cure team members are Ray Benza, MD; Bob Frantz, MD; and Jessica Lazar, PA.

Host a Unity Walk
This February, show your support for the Path to a Cure team by hosting a Unity Walk in your hometown. Planning a Unity Walk to coincide with the mountain climbers' arrival at the summit of Mt. Kilimanjaro is fun and easy. To make it really easy, PHA has created a short guide to planning your event and raising funds.

For more information, contact Jessica McKearin at 301-565-3004 x765 or
New Email Groups for Young Adults, Patients with Associated Illnesses and Family Members of PH Patients!
Now, it's easier than ever to connect with people who know what you're going through. PHA has three new email groups for special populations of patients and caregivers. These new groups require a free Google account.
  • Generation Hope for college students, young professionals and other 20- and 30-somethings living with pulmonary hypertension
  • PH Plus for PH patients managing multiple illnesses
  • PHA Family for family members and caregivers of PH patients
  • Don't forget: PHA Parents is a long-standing PHA email community for parents of children with PH!
Join PHA's email groups today, then spread the word to friends and family!

Our thanks to the more than 50 community members who participated in our recent Medicare Part D and Enrollment: Choosing a Plan that Works for You chat with the Medicare Rights Center (MRC). If you missed the chat, you can download the transcript (PDF) and the Find the Right Medicare Part D Plan for You tip sheet (PDF).

Visit Medicare Interactive, call the MRC hotline at 1-800-333-4114 or contact the Caring Voice Coalition for answers to your specific Medicare questions and for additional assistance in selecting a plan. You can also sign up for electronic newsletters and alerts from the MRC for regular updates about Medicare. 

Don't forget that the Annual Coordinated Enrollment Period ends December 31!
Dr. Myung ParkSticking to your diet can be difficult when the holiday treats are stacked up. If you couldn't attend our Healthy Eating e-Learning Event about eating right with PH, you can still take advantage of the expert advice from Dr. Myung Park.
Watch the video recording of our November webinar to learn more about keeping your weight in check during the winter holidays. 
Congratulations to four young researchers -- Drs. David Kass, Sean McLean, Alexander Opotowsky and Michael Eric Yeager -- who recently were named as 2009 Entelligence awardees. The grants are funded by Actelion. Read more (PDF)
PH in the NewsPH IN THE NEWS
Double Lung Transplant Patient from Mustang Receives a New Chance at Life
(The Oklahoman) - Some people dread going to the shopping mall this time of year. But Mustang resident Lori Red-Ademiluyi is treasuring her trips this season because she's finally well enough to take part in the holiday activity. Read article
Clinical Programs With Riociguat In PH Well On Track
(Medical News Today) - A first Phase II trial with Bayer Schering Pharma's oral agent riociguat in pulmonary hypertension owing to interstitial lung disease (PH-ILD) has successfully been completed. Read article
IV Sildenafil Safe and Effective for PH in Neonates: Phase I Study
(Reuters Health) - Intravenous sildenafil safely improves oxygenation in critically ill neonates with persistent pulmonary hypertension of the newborn (PPHN). Read article
The Drug Information Association (DIA), U.S. Food and Drug Administration (FDA) and the Pulmonary Vascular Research Institute (PVRI) will jointly sponsor a symposium March 2-3, 2010. The symposium will feature debates on Clinical Trials in Pulmonary Arterial Hypertension, including the six-minute walk test as an adequate indicator of efficacy, whether the WHO group I approved drugs are appropriate for all patients and more. Learn more (PDF)

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.