PHA News
In This Issue
Get Ready to Ride the Wave to a Cure
Small Steps Toward Making a Big Difference in Your Life
Get Acquainted with PHA's New Website
Generation Hope Unites with Path to a Cure Climbers
Insurance Brainstorm for Conference
Extra Help for More Low-Income Medicare Recipients
PH in the News
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.
 
PHA's 9th International PH Conference: What to Expect
 Jan. 26, 2010
Conference call
 
Lifestyle Modifications for Improved Quality of Life
Jan. 27, 2010
Webinar
 
Path to a Cure Kilimanjaro Unity Walk
 Jan. 29, 2010
Pittsburgh, Penn.
 
Tour PHA's New Website
Feb. 2, 2010
Webinar
 
Path to a Cure Kilimanjaro Unity Walk
 Feb. 13, 2010
Maplewood, Minn.
 
BCPHS 9th Annual PH Symposium
March 6, 2010
Vancouver, British Columbia (Canada) 
 
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 11/Number 2 January 22, 2010
PHA logoPHANews Editor - Sally Maddox
skshmaddox@yahoo.com
Contributing Editors - PHA staff
 
Reaching over 6,500 subscribers
www.PHAssociation.org
GET READY TO RIDE THE WAVE TO A CURE

9th International Pulmonary Hypertension Conference and Scientific Sessions, Riding the Wave to a Cure, Garden Grove, California, USA, June 25-27, 2010

Register
Registration for PHA's 9th International Pulmonary Hypertension Conference and Scientific Sessions, Riding the Wave to a Cure, is now open! Register early to receive a $25 early-bird discount. You may also complete the form in your registration brochure (mailed with Pathlight) or print the form (PDF) and fax it to PHA at 301-565-3994.
 
Connect
The International PH Conference is now on Facebook! RSVP to the Facebook event once you have registered to connect with other Conference attendees.
 
Learn
Linda CarrPHA's 9th International PH Conference: What to Expect
Tuesday, January 26, 6:30 p.m. ET
Conference call
With the event only a few short months away, the International PH Conference Committee Co-Chairs, Linda Carr and Cindy Pickles, want to provide an overview of what to expect at Cindy PicklesConference, let everyone know what's new, and answer questions. Jennie Carman will give an update on the Conference Scholarship Fund.
 
 
PHA's monthly e-Learning Events are made possible through an unrestricted educational grant from Pfizer Inc.
SMALL STEPS TOWARD MAKING A BIG DIFFERENCE IN YOUR LIFE
Lifestyle Modifications for Improved Quality of Life
Wednesday, January 27, 6:00 p.m. ETJanet Pinson
Webinar - web login AND phone call
 
Daily living with a progressive and terminal disease can be challenging. Medications help, but are expensive and can be difficult to use. Making small changes in daily activities and lifestyle can make a big impact in how PH patients feel. Join Janet Pinson, NP, for an online presentation on how to make small lifestyle modifications to improve your overall quality of life.
 
PHA's monthly e-Learning Events are made possible through an unrestricted educational grant from Pfizer Inc.
GET ACQUAINTED WITH PHA'S NEW WEBSITE
Webmaster DianeTour PHA's New Website
Tuesday, February 2, 3:00 p.m. ET
Webinar - web login AND phone call
 
 
Join Webmaster Diane, your guide for the afternoon, as she leads you on a virtual tour of PHA's new website. You'll see all of your old favorites, visit a few new places and learn how to navigate like a pro! If you can't make it Feb. 2, you can watch the recording of our January 21 tour.
 
PHA's monthly e-Learning Events are made possible through an unrestricted educational grant from Pfizer Inc.
GENERATION HOPE UNITES WITH PATH TO A CURE CLIMBERS
Colleen BrunettiPHA's Generation Hope, a group of PH patients in their late teens through thirties, will be holding several virtual Unity Walks to raise awareness and funds for February's Path to a Cure climb of Mt. Kilimanjaro. While Dr. Benza, Dr. Frantz and PA Jessica Lazar are scaling the African peak, these virtual walks will join them in solidarity. 
 
You can help these brave young PH patients in their quest for a cure by donating to their Firstgiving sites. Every dollar you contribute will be doubled by Actelion's Path to a Cure fund, which will match up to $50,000 in donations.
INSURANCE BRAINSTORM FOR CONFERENCE
Help us address insurance issues during a Conference session!
 
At this year's International PH Conference (June 25-27 in Garden Grove, Calif.), we will have the opportunity to host a small session about building PHA's insurance program. We need your help to make the most of this opportunity!

If you'll be at PHA's 9th International Pulmonary Hypertension Conference and Scientific Sessions, please let us know:
  • If an informal session on insurance advocacy and education would be beneficial to you.
  • What specific topics would be most valuable. (Please consider general topics or topics that will affect a wide range of PH patients.)
  • If you would prefer a training-style session or an open discussion.

Please send your comments and suggestions to Margaret at Insurance@PHAssociation.org or 301-565-3004 x773.

 

EXTRA HELP FOR MORE LOW-INCOME MEDICARE RECIPIENTS
As of January 1, 2010, more Medicare beneficiaries can qualify for Extra Help, the Medicare program that helps low-income Medicare recipients cover the costs of prescription drugs. The new law relaxes the eligibility requirements for Extra Help and no longer counts certain financial resources as income.
 
PH in the NewsPH IN THE NEWS
Pulmonary Arterial Hypertension: New Treatments and New Options
(ITV) - This program explores pulmonary arterial hypertension, a relatively rare disorder that attacks a patient's heart and lungs. Watch video 
 
Chelsea's Story
(WKRG) Mobile, Alabama - A new book is celebrating the life of a teenager, who passed away three years ago, after a double lung and heart transplant. Read article
 
Airlines Found to be Penalizing Disabled Travelers
(EasierTravel) United Kingdom - Charity bosses are calling on airlines to stop penalizing passengers with breathing difficulties after 'secret shopper' research by national patient support charity, Pulmonary Hypertension Association UK (PHA-UK), launched at Westminster, unearthed a bewildering lottery of surcharges, policies & woeful customer service facing the estimated 90,000 potential 'fit to fly' disabled air travellers with lung conditions such as Pulmonary Hypertension (PH) or COPD who require supplementary oxygen in flight. 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.