PHA News
In This Issue
Medical Professionals, Take Advantage of These Conference Opportunities!
Path to a Cure Team Begins Its Trek to the Top of Africa
Non-Patient Conference Award Provides Scholarship to a PHA Volunteer
Well-Deserved Recognition Goes to Committed Dad
Get Ready to Raise Awareness on Rare Disease Day
Social Security Administration Expands Compassionate Allowance Program
PH in the News
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Upcoming Events
    
Sing PHrom the Heart
Feb. 19, 2010
Daleville, Va.

Path to a Cure Kilimanjaro Unity Walk - Orange County
Feb. 20, 2010
Newport Beach, Calif.

Path to a Cure Kilimanjaro Unity Walk - West Virginia Eastern Panhandle
Feb. 20, 2010
Martinsburg, W.Va.

Path to a Cure Kilimanjaro Unity Walk - Winston-Salem, N.C.
Feb. 23, 2010
Winston-Salem, N.C.

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 4 February 19, 2010
PHA logoPHANews Editor - Sally Maddox
skshmaddox@yahoo.com
Contributing Editors - PHA staff
 
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MEDICAL PROFESSIONALS, TAKE ADVANTAGE OF THESE CONFERENCE OPPORTUNITIES!

Conference bannerSubmit Your Abstracts and Research Room Applications by March 1

Research RoomMarch 1 is the deadline for Abstract Submissions and Research Room Applications for our International PH Conference and Scientific Sessions.  

Abstracts will be featured during the Scientific Sessions poster sessions, with four abstracts selected for presentation during Conference. The top two abstracts will receive an award. Submit your abstract now or, for more information, email Abstract@PHAssociation.org or call 301-565-3004 x770.

The Research Room offers research teams the opportunity to collect data and biological specimens from interested International PH Conference attendees. Apply now or, for more information, email Researchroom@PHAssociation.org or call 301-565-3004 x770.
PATH TO A CURE TEAM BEGINS ITS TREK TO THE TOP OF AFRICA

Today, after months of preparations, Drs. Dr. FrantzBenza and Frantz and Jessica Lazar, PA, are beginning their climb to the summit of Mount Kilimanjaro, the roof of Africa. In just seven days, they will be standing 19,334 feet above sea level with shortness of breath, having developed a temporary case of pulmonary hypertension due to the extreme altitude.  

Dr. Benza and JessicaThanks to your invaluable support and Actelion's $50,000 Path to a Cure Matching Fund, our climbers have exceeded their goal of raising $100,000 for PHA's Research Program and patient- and family-serving programs. Now we invite you to follow the team's updates at "Live from the Mountain," view the Path to a Cure press release and world premiere video and share the news with your local press and friends.

The climbers will spend 10 long days scaling and descending the mountain, where they'll tackle such obstacles as glaciers, the famed Barranco Wall and a huge change in weather from the base to the summit. We wish the three a successful and exhilarating climb.

Learn more about how you can support their climb
NON-PATIENT CONFERENCE AWARD PROVIDES SCHOLARSHIP TO A PHA VOLUNTEER

Jerry Paton and Steve Van Wormer (2008 awardee)PHA founding members Pat and Jerry Paton (pictured left with Steve Van Wormer) invite all non-patient PHA volunteers to apply for the Julie Hendry Memorial Scholarship Award, named for their daughter, Julie Paton Hendry.

"Our daughter volunteered since the day PHA started," said Pat Paton. "Volunteers are important too, and we want to acknowledge those who follow in her footsteps by offering them an opportunity to attend Conference. Anyone can apply if they are an eligible PHA volunteer - support group leaders, fundraisers, Pathlight contributors, anyone who has given their time to our cause."

This award offers a non-patient, active PHA volunteer up to $1,000 to help cover the cost of Conference registration and transportation. The deadline for applications is April 1, 2010.

Apply now
WELL-DESERVED RECOGNITION GOES TO COMMITTED DAD

Jack StibbsPHA was delighted - but not surprised - that his home community recognized Jack Stibbs with an Interfaith of The Woodlands (Texas) 2010 Service of Excellence Award. Jack was honored in the Youth category, primarily for raising more than $1.5 million over 10 years to support PHA's research program through a series of special events.

According to Jack's daughter Emily, a PH patient, "My father has sacrificed so much ... and is truly a man of compassion and perseverance." In supporting Jack's nomination, PHA President Rino Aldrighetti noted that "Jack has committed his leadership as a volunteer, Board member and later as Board chair to increase opportunities for patients through research."

Way to go, Jack!
GET READY TO RAISE AWARENESS ON RARE DISEASE DAY

This February, raise awareness about pulmonary hypertension - and other rare diseases - for Rare Disease Day on Feb. 28.
Don't forget to let PHA know how you've gotten involved! Send your photos, videos and stories to
SOCIAL SECURITY ADMINISTRATION EXPANDS COMPASSIONATE ALLOWANCE PROGRAM
PHA Continues to Advocate for the Inclusion of PH

On March 1, 2010, 38 new conditions will be added to the Social Security Administration (SSA) Compassionate Allowance list. People with diseases on the Compassionate Allowance list automatically qualify as disabled, allowing SSA to quickly target the most obviously disabled individuals for allowances.

Learn more about the expanded list

While pulmonary hypertension is not included on the list of diseases that qualify for compassionate allowance, PHA has been building a relationship with SSA to ensure that PH patients have access to disability benefits. PHA continues to work with SSA to encourage the inclusion of PH on the Compassionate Allowance listing and the updating of PH-related disability listings.
PH in the NewsPH IN THE NEWS
A Whole Lot of Heart
(The Hudson Reporter) Hudson County, N.J. - For one North Bergen child, life has been a series of obstacles, but he has overcome them even when the odds were against him.
Read article

Sarcoidosis-Associated Pulmonary Hypertension: A Role for Endothelin Receptor Antagonists?
(Medscape) - Data on the treatment of sarcoidosis-associated pulmonary hypertension are scarce, while the variety of underlying pathophysiologic mechanisms are a major limitation in the implementation of a universal therapy. Addition of bosentan, a dual endothelin receptor antagonist, resulted in marked improvement in functional class and exercise capacity of the patient, allowing gradual tapering of steroids. Read article

Artificial Lung Tissue Developed for Premies
(The Johns Hopkins News-Letter) - Pre-term babies have several obstacles to overcome, and one of the most challenging is pulmonary hypoplasia. Although there have been various state-of-the-art treatments for pulmonary hypoplasia, later in life, infants can still suffer from pulmonary hypertension, hyaline membrane disease and acute respiratory distress syndrome. 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.