PHA News
In This Issue
More Than 1 Million People Reached by PH Awareness
Patients Gain 2nd Senate Bill Co-sponsor
Attend Traveling with PH Webinar
Thanks to Winter Special Events
Welcome New Chat Host Stu Berwick
Stay Connected with Conference
PH in the News
Medical Events Near You
Quick Links
Donate Now
 
Sustainers Circle - Monthly Gift
Upcoming Events
The Woodlands Crawfish Festival
March 27, 2010
The Woodlands, Texas
 
Planes, Trains, Cars and more: Travel to PHA's 9th International PH Conference
April 1, 2010
webinar
 
Rock Your Heart Out for Pulmonary Hypertension
April 2, 2010
Atlanta, Ga.
 
2nd Annual Scramble For A Cure April 17, 2010
Las Vegas, Nev.
 
It's All PHun & Games
April 18, 2010
Westminster, Colo.
 
4th Annual Spur a Cure for PH
April 24, 2010
Phoenix, Ariz.
 
Inaugural Southwest Virginia Funwalk for PH
May 22, 2010
Radford, Va.
 
International Conference on Pulmonary Circulation
June 2-5, 2010
Prague, Czech Republic
 
PHA's 9th International PH Conference and Scientific Sessions
June 25-27, 2010
Orange County, Calif.
Vol 11/Number 6 March 19, 2010
PHA logoPHANews Editor - Sally Maddox
skshmaddox@yahoo.com
Contributing Editors - PHA staff
 
Reaching over 6,500 subscribers
www.PHAssociation.org
PATH TO A CURE BRINGS PH AWARENESS TO MORE THAN 1 MILLION
Adrienne sigAs we reported last issue, Dr. Raymond Benza, Dr. Robert Frantz and Jessica Lazar, PA, successfully reached the summit of Mt. Kilimanjaro, the highest peak in Africa, on February 26. We are happy to report that at the latest tally their story garnered 62 media hits reaching more than 1.2 million people! Read news coverage
 
In support of our climbers, our young adult PHers of Generation Hope and our Unity Walk organizers generated 20 media hits in addition to raising over $18,000 of the nearly $64,000 raised by the PH community. Thanks to a generous matching fund the Path to a Cure campaign has raised nearly $114,000 to-date. Again, we thank the Unity Walk organizers and the entire PH community for their support. We would also like to thank matching fund partner, Actelion; Gilead and Weber Shandwick for their PR support; and our other corporate sponsors.
 
 
Invite Local Media to Your Event
PHA offers media outreach tools and support through our PHAware Campaign, including specific help for support group leaders and anyone planning a special event. Learn more about getting media coverage of your event online or contact Katie at 301-565-3004 x749.
PATIENT OUTREACH LEADS TO 2ND SENATE CO-SPONSOR FOR PH BILL
Your Help Needed to Keep up the Momentum
 
Take ActionSen. Kay Hagan (D-NC) recently became the second U.S. Senate co-sponsor of the Tom Lantos PH Research and Education Act of 2009. In order to move forward, the PH bill needs additional co-sponsors.
 
Diane Ramirez, Cindy Pickles, Sen. Kay Hagen, and Janet CecilPH patients Diane Ramirez, Cindy Pickles and Janet Cecil met Sen. Hagan in Washington, D.C. (pictured right), and then followed up with her staff through phone calls and emails. Building support for PH legislation doesn't require a trip to the Capitol. It just takes a few simple steps and some support from PHA.
 
Schedule a visit with your senator or a staff member in one of their offices in your home state. When you request co-sponsorship of the PH Research and Education Act you:
  • Move the bill closer to passage
  • Build support for increased PH research and medical professional awareness programs
  • Bring us closer to a cure
Schedule a visit with your senators today!
Contact Katie at 301-565-3004 x749 or Advocacy@PHAssociation.org or use the resources in PHA's Advocacy Action Center.
PLANES, TRAINS, CARS & MORE: TRAVELING WITH PH WEBINAR
9th International PH Conference and Scientific Sessions, Riding the Wave to a Cure, Garden Grove, California, USA, June 25-27, 2010
 
Planes, Trains, Cars and More: Travel to PHA's 9th International PH Conference
Thursday, April 1, 2010
6:30 p.m. ET
 
 
planeJoin PH Resource Network Immediate Past Chair Joy Beckmann, RN, MSN, and the International PH Conference Planning Committee Co-Chair Cindy Pickles, RN, BSN, as they discuss measures PH patients should take while planning their trip and traveling, including to PHA's International PH Conference in Garden Grove, Calif., this coming June 25-27.
 
PHA's monthly e-Learning Events are made possible through an unrestricted educational grant from Pfizer Inc.
WINTER SPECIAL EVENTS GIVE WARMTH TO PH COMMUNITY

As winter begins to melt into spring, we extend our thanks and gratitude to the dedicated volunteers who hosted special event fundraisers during the chilly months of January and February. The cold did not keep the events' organizers, participants and supporters from having a fun and meaningful time while raising awareness of PH!

  • 3rd Annual A Cure for Five Pennies - Shaumburg, Ill.
  • 3rd Annual California Fish Fry - San Diego, Calif.
  • New Trier Girls Basketball Shoot-a-thon for PHA - Winnetka, Illinois
  • Inaugural Sing PHrom the Heart Concert - Roanoke, Va.
  • Path to a Cure: Kilimanjaro Climb - Tanzania, Africa

Twin Cities Path to a Cure Unity WalkA heartfelt thanks to the courageous Path to a Cure climb team: Dr. Ray Benza, Dr. Bob Frantz, and Jessica Lazar, PA-C

Very special thanks to our Unity Walkers, who supported the team each step of their trek:

  • Pittsburgh Unity Walk
  • South San Francisco Unity Walk
  • Orange County, Calif. Unity Walk
  • Winston-Salem, N.C. Unity Walk
  • Minnesota Metro Unity Walk
  • Twin Cities (Minn.) Unity Walk (pictured above)
JOIN US IN WELCOMING NEW CHAT HOST, STU BERWICK

Stu BerwickIt is our pleasure to introduce our new online support group chat host, Stuart (Stu) Berwick. Stu has been active on Facebook, helping to build a strong presence there for PH awareness and community, and giving his "Periwinkle Awards" of recognition to others.

Stu is a nine year PH patient living in Texas; he is also a Stage 4 Cancer survivor, originally from England and now a naturalized citizen. He enjoys volunteer work at his church, filming Children's Ministry programming, soccer, LeMans and photography.
 
To welcome Stu and participate in the conversation, join Stu's online support group chat every Thursday at 8:00 p.m. ET when he co-hosts with Mack McCarthy.

STAY CONNECTED WITH CONFERENCE
Conference banner
 
There are more ways than ever to stay connected with our International PH Conference. These online features will keep you informed and connected with friends.
  • girl on computer at Conference in 2008Conference Blog: Find out what the Conference planners are up to and what they are most looking forward to as Conference approaches.
  • Follow us on Twitter: Follow PHA @short_of_breath on Twitter for the latest updates on all of our amazing goings-on including Conference. Join us and use the Conference hash-tag #PHConf to mark one of your tweets if it relates to Conference. We will be tweeting live from Conference in June so you can follow along.
  • Conference Alerts: Sign up to receive email alerts about the latest Conference news and announcements.
  • Conference Facebook Event Page: You might be familiar with the PHA Facebook page, but did you know we also have a Conference event page? RSVP to the event to connect with other attendees.
  • Conference Room-Share/Ride-Share Board: Find other attendees to share a room or ride with.
We will offer a new Skill Building Workshop at Conference - PHA 2.0: Using the Web to Fight Against PH - where you can learn to harness the power of the Internet to fight PH. Look for more about this workshop and other Conference sessions in next week's "Conference Special Edition" of PHANews.
 
PH in the NewsPH IN THE NEWS
FDA Clears GeNO LLC Investigational New Drug Application for Nitric Oxide Delivery System
(PRNewswire) - GeNO LLC a privately held, advanced development-stage technology company, announced that the U.S. Food and Drug Administration (FDA) has granted clearance of  its Investigational New Drug (IND) application for its stand-alone gas cylinder Nitrosyl™ Delivery Platform (NDP). The initial indication to be studied for nitric oxide delivered via the GeNO Nitrosyl delivery system is as a diagnostic agent for administration as an adjunct to right heart catheterization in patients with Pulmonary Arterial Hypertension (WHO Group 1) to add information to improve clinical decision making. No agents are currently approved for this indication. Read article 
 
11-Year-Old Who Lost Mother to PH Speaks Out in Healthcare Debate
(McClatchyDC.com) - Marcelas Owens from Seattle headlined a press conference with Senate Democratic leadership Thursday, and is now being attacked by talk radio. He talked about how his mother was diagnosed with PH, lost her job along with her health insurance after missing a lot of work, and later died. PHA Advocacy and Awareness Director Katie Kroner is quoted in the article. Read article
 
Miss India Worldwide UK Trying to Find Pulmonary Hypertension Cure

(OneIndia) - Beauty and brains come together in the case of recently crowned Miss India Worldwide UK, Niharica Raizada, who continues to be engaged with her job in stem cell research at a London hospital. Read article 
 
MEDICAL EVENTS NEAR YOU

Medical Professionals

The Alfred P. Fishman Symposium: Right Ventricular Structure and Function in Health and Disease
Friday, April 9 - Saturday, April 10, 2010
University of Pennsylvania School of Medicine

This symposium will honor Alfred P. Fishman, MD, who has contributed greatly to the understanding of cardiopulmonary interaction. The event is geared toward physicians and researchers in cardiovascular and pulmonary medicine, allied health professionals, nurses, fellows, residents and students interested in the PH field. For more information, view the brochure (PDF), contact penncme@mail.med.upenn.edu or call 215-989-8005.

Pulmonary Hypertension: 2010 "Learning with the Stars"
Saturday, April 10, 2010
The Carl & Edyth Lindner Center for Research and Education and The Christ Hospital

This symposium is geared toward general practice physicians, cardiologists, pulmonologists, rheumatologists, nurse practitioners, physician assistants, emergency medicine physicians, nurses and medical staff providing care for patients with pulmonary hypertension. The symposium will provide a broad overview of the current classifications of PH, diagnosis, evaluation and treatment. For more information, view the brochure (PDF), contact Gail Welsch at Gail.Welsch@thechristhospital.com or call 513-595-1777.


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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.