PHA News
In This Issue
Kilimanjaro Climbers Reach Summit, Exceed Fundraising Goal
Caring Voice Coalition to Assist with PH Disability Claims
Show Your Appreciation to Your Loved Ones, Doctors and Nurses
A Message to Caregivers
Conference Medical Professional Deadlines Extended
Year of the Lung Resolution Includes PH
PH in the News
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Upcoming Events
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.
 
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 5 March 5, 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 CLIMBERS REACH MOUNTAIN SUMMIT, EXCEED FUNDRAISING GOAL!
Dr. Frantz, Dr. Benza, Jessica Lazar, PA, at the summit of Mt. Kilimanjaro Feb. 2010"It was simply astounding being on the top of that mountain. You can see half of Africa. I can tell you it was unbelievable - unbelievable," Dr. Raymond Benza exclaimed after a seven day climb to the summit of Mt. Kilimanjaro. Dr. Robert Frantz, Dr. Benza and Jessica Lazar, PA, (pictured right) summitted Mt. Kilimanjaro, the highest mountain in Africa, this past Friday, February 26, after a grueling climb.

The climbers fought lack of oxygen and altitude sickness to get to the top, experiencing symptoms that their PH patients live with daily. Dr. Frantz said in a Rochester, Minn., Post-Bulletin interview from the mountain, "We're getting short of breath literally getting dressed, which is really amazing. I'll sort of scramble around in the tent to get my stuff on and have to rest for a few minutes because my heart rate's gone up and I'm out of breath."

Throughout the climb, PH community members supported and followed the climbers every step of the journey, which included organizing Unity Walks around the country and virtual walks online. Overall, PHA's Path to a Cure climb has raised over $110,000 to date for PHA's research and patient serving programs, exceeding the original ambitious goal of raising $100,000. The campaign also garnered a lot of news coverage, raising awareness of PH in the general public.

PHA and the climbers would like to send a huge thank you to the PH community, including the organizers of live and virtual Unity Walks, our corporate sponsors and everyone who donated to help make this event a success.

 

CARING VOICE COALITION EXPANDS SERVICES TO INCLUDE ASSISTANCE FOR PH DISABILITY CLAIMS
In addition to free insurance counseling, need-based financial assistance, peer mentoring and other support services, Caring Voice Coalition (CVC) now also provides legal assistance for disability claims to PH patients -- services formerly offered by PSI ACCESS.
 
Please direct questions about disability benefit eligibility and appeals to Caring Voice Coalition at 1-888-267-1440.
 
SHOW YOUR APPRECIATION TO YOUR LOVED ONES, DOCTORS AND NURSES
Conference banner
 
PHA's upcoming International PH Conference provides two great ways to recognize your loved ones, doctors and nurses who have helped you on your PH journey. Attendance at Conference is not necessary to participate.
 
Include a Note of Thanks and Remembrance in the Conference Program Book
Notes of Thanks and Remembrance (in honor, in memory, in appreciation of) will be featured in our Conference program book for $25/entry (40 word maximum). These notes are a great way to acknowledge someone special in your life and let them know how much you appreciate their support.
 
Submit notes to Jillian@PHAssociation.org
More information: 301-565-30004 x767
Deadline: May 1
 
Joe Haan and his family as he received the PHA Outstanding Caregiver Award at our 2008 ConferenceNominate a PH Champion for an Outstanding Member Award
PHA's Outstanding Member Awards recognize the unique contributions of PHA members to the pulmonary hypertension community at large. They include categories for medical professionals, patients, caregivers and volunteers.
 
More information: Outstanding Member Awards page or 301-565-3004 x756
Deadline: April 1
 
Don't forget to register for Conference before April 1 to receive your $25 early-bird discount. Register now! | Visit Conference site
A MESSAGE TO CAREGIVERS: YOU ARE NOT ALONE

"Sometimes I say, 'When we were diagnosed.' You know, it's changed my life too."
- Patrick, PH Caregiver since 1999

Caregiver and PH patient at a PHA funwalkFor every PH patient, there's a loved one standing by. Family members of PH patients now have an email group just for them: PHA Caregiver. This group is every caregiver's chance to ask questions, share information and express concerns with others going through something similar. We know that pulmonary hypertension can be life-changing for the entire family.


(Membership requires a free Google account.)

Parent of a child with PH?
Join our PHA_Parents email group
 

We also have a new section on our website dedicated specifically to Caregiver issues, including parenting a child with PH. Check out the Caregiver web section

 

CONFERENCE MEDICAL PROFESSIONAL DEADLINES EXTENDED

Medical ProfessionalsDeadlines for Abstract submissions and Research  Room applications for PHA'S 9th International PH Conference and Scientific Sessions have been extended to March 31. 

YEAR OF THE LUNG CONGRESSIONAL RESOLUTION INCLUDES PULMONARY HYPERTENSION

2010 is the Year of the Lung. The PH community is part of a world-wide effort to draw attention to lung disease this year and there are lots of opportunities to get involved.

On February 26, Rep. John Lewis (D-GA) submitted a resolution supporting the goals and ideas of the Year of the Lung in the U.S. House of Representatives. The resolution highlights several diseases on which increased public awareness and research will have a significant impact. Pulmonary hypertension is one of them.

 

PH in the NewsPH IN THE NEWS
United Therapeutics Withdraws PH Drug Application in Europe
(Washington Business Journal) - Silver Spring, Md.-based United Therapeutics Corp. has pulled the plug on its European marketing application to sell Tyvaso (TM) (treprostinil), an inhaled version of its pulmonary arterial hypertension drug, because its chances for approval in the European market seemed unlikely. Read article 
 
Nine Year Old PH Patient in Spain Supports Anti-Poverty Entrepreneur Loans
(Kiva Blogger List) - "Team Tia - Loan Around the Globe" is a Kiva lending team dedicated to Tia, a nine-year old girl living in Murcia, Spain. Tia has been diagnosed with several illnesses including dilated cardiomyopathy, Graves Basedow disease, pulmonary arterial hypertension, and congestive heart failure. Read article
 
NOW YOU CAN GET THE LATEST PH NEWS DAILY
What's New homepage feedHave you seen the What's New feed featured on our website homepage? Our What's New feed is updated daily with the latest PH news in the media, new content on our site, action alerts, useful information, community news, PHA activities and events and more. 
 
But there's more to it than meets the eye. The articles on the homepage come from the latest five news alerts. You can read the full What's New feed in our News & Information section. And, as a new feature on our website, you can sign up to receive the RSS feed so you'll get the latest alert as soon as we post it!
 
Don't have a RSS news reader? With a free Google account you can use Google Reader.
 


The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

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.