PHA News
In This Issue
Last Chance to RSVP for the Congressional Luncheon
On This Test, Everyone Gets an 'A'
Keep Your Diet on Track During the Holidays
PH Community Succeeds During Awareness Month
Climbing Our Way to a Cure
Raise Awareness with Experts' Media Tips
H1N1 Flu Notice
Medicare Decides on Pulmonary Rehabilitation Coverage
PH in the News
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Upcoming Events
3rd Annual N TX PH Funwalk
Nov. 14, 2009
Euless, Texas 
A Vegas Fundraiser in Support of PH 
Nov. 14, 2009
Toronto, Ontario
2nd Annual South Florida Funwalk
Nov. 14, 2009
Pompano Beach, Fla.
Passionate Hearts for Pulmonary Hypertension (PH for PH)
Nov. 15, 2009
Pittsburgh, Pa.
Congressional Luncheon 2009
Nov. 18, 2009
Members Room
Library of Congress
Pulmonary Hypertension Summit: Translating Discoveries into Patient Care
Nov. 20-21, 2009
Cleveland, Ohio 
Glitz, Glitter and Glam!
Nov. 20, 2009
Sarasota, Fla.
2nd Annual Gospel Music Extravaganza
Nov. 21, 2009
Roseland, La.
 5th Biennial Rochester PH Gala: Reach for the Stars
Nov. 21, 2009
Rochester, Minn.
Inaugural Louisiana Fun Walk for Pulmonary Hypertension
Nov. 28, 2009
Chalmette, La.
7th Annual Update in Pulmonary Hypertension
Dec. 4, 2009
Cambridge, Mass.
Vol 10/Number 23 November 13, 2009
PHA logoPHANews Editor - Sally Maddox
Contributing Editors - PHA staff
Reaching over 6,500 subscribers
Wednesday, Nov. 18, 2009
12:00 p.m. ET
Members Room
Library of Congress (Jefferson Building)

The 2009 Congressional Luncheon is just a few days away. It provides a unique opportunity for members of Congress to meet and talk with PH patients. These meetings make elected officials more likely to support legislation that benefits the PH community.

Don't miss the last chance to be involved!
Contact Katie with questions at 301-565-3004 x749 or
In less time than it takes to soft boil an egg, you can be one of 5,000 people who help raise $50,000 for PHA. By taking a brief online quiz at, you'll test your knowledge about PH and secure a $10 donation to PHA from Gilead. 
There are two quizzes: one for patients and their families and one for medical professionals. This is a quiz that the PH community can't fail. Tell your friends. Tell your neighbors. Help PHA meet this Awareness Month Challenge!
Dr. Parke-Learning Event Series
Healthy Eating: Tips for the Holiday Season
Monday, Nov. 23
6:00 p.m. ET
Webinar: phone AND web

The holiday season is upon us! It's always important for PH patients to maintain a healthy, well-balanced diet, and the holidays can be especially challenging.

Join Dr. Myung Park for an online presentation about how to maintain healthy eating habits when faced with a Thanksgiving feast and other holiday treats. Dr. Park will provide a short presentation followed by an interactive discussion and Q & A.

PHA's monthly e-Learning Events series is made possible through an unrestricted educational grant from Pfizer, Inc.
Awareness Month skaterAwareness Month is in full swing and PHers everywhere are answering the call to educate their communities and spread the word about PH. Here are just a few of the PH community's successes this November:
  • Carol Lindstrom got proclamations from the city of Bellevue, Neb., and the governor of her state declaring November PH Awareness Month. In an article in her local newspaper, she tells her story, shares information on PH and talks about how she works for a cure.
  • Doug Taylor, from Lexington, S.C., got four proclamations declaring November PH Awareness Month. He's also been reaching out to other Support Group Leaders online to encourage and help them with their own proclamations.
  • The St. Louis PH Support Group hosted a Dinner and Wine Tasting fundraiser on Nov. 7. The 180 people who attended included PHA Board Chair Carl Hicks, and together they raised more than $8,000 for a cure.
  • On Facebook, more than 70 PHers are helping PHA raise awareness as Team Leaders and countless others are helping us spread the word. Visit PHA on Facebook

Have you been raising awareness this November? Let us know about it at For information on how you can get involved, visit the Awareness Month homepage.

KilimanjaroIn February 2010, Drs. Ray Benza and Robert Frantz will be at the top of the continent of Africa when they ascend the 19,330-foot Mount Kilimanjaro. Organize a Unity Walk in your area to show solidarity with the climbers and raise awareness of PH.

Wednesday, Dec. 2
3:00 p.m. ET
Webinar - phone AND web login

If you missed November's webinar about raising awareness of PH through the media, you have another chance to participate on Dec. 2!
  • Discuss sharing your story, promoting your upcoming event and educating your community through local media
  • Learn from other community members' Awareness Month successes
  • Participate in a question and answer session with media experts from public relations firm ECI Communications

This training session is free - all you need is a telephone and a computer with an Internet connection.

Due to the pandemic nature of H1N1 in our country today, if you are a PH patient, transplanted patient or direct caregiver, you should contact your PH (or transplant) physician immediately for guidance concerning whether vaccination is the right course for you.
Medicare updated its national policy on pulmonary rehabilitation (PR) in a ruling released Oct. 30. While the ruling mentions PH, it only addresses and covers PR services for COPD patients.

However, PH patients should not be discouraged because the final ruling does not affect the local coverage determinations. In other words, providers can continue to offer (and be reimbursed for) PR services for non-COPD patients if local Medicare regulations allow it.

Download the complete ruling to learn more (information specific to PR begins on page 673). If you have questions about the determination, contact Margaret at or 301-565-3004 x772. 
PH in the NewsPH IN THE NEWS
Harrington Teen Returns Home after Lung Transplant
(WABI-TV 5) Harrington, Maine - When we first introduced you to Brandon Beal of Harrington, the teenager had just learned he needed a lung transplant. Two months later, he's had the procedure and today, he got a surprise welcome home reception. Read article
Karaoke for a Cause at Fundraiser 
(Post-Bulletin) Rochester, Minn. - Southeastern Minnesota residents now have a legitimate, humanitarian reason to sing the love song from the movie "Titanic" at the Pulmonary Hypertension Association's fifth biennial gala. Read article

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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.