May 1, 2013

PHA News, Pulmonary Hypertension Association, Empowered by hope
Latest Blog Post from PHA's President
    Yonkers to Jeddah

From Yonkers to Jeddah ... in Common Cause

Two days after I attended Dr. Robyn Barst’s funeral in Yonkers, N.Y., Julia Friederich (PHA's International Associate) and I flew across the world to Saudi Arabia. We had been invited to attend the Saudi Association for Pulmonary Hypertension’s (SAPH) educational meetings. The two events were more than 6,000 miles apart, but they had an extraordinary connection. » Read more

What's In This Issue

» Spotlight On... DOD Funds PH Research
» Get Smart
» Living Better with PH

» From the PHA News Desk
» Medical Community Bulletin
» PH News Headlines

Spotlight On...
    Carl Hicks

PH Selected as Research Area for DOD Grant Programs

Researchers studying PH causes and treatments have a new opportunity to get money to support their work – grants from the Department of Defense (DOD). Each year, the DOD makes up to 30 diseases eligible for study in its Peer Review Medical Research Program, which funds research on diseases that impact military personnel and their families. In 2013, PH is one of the eligible diseases thanks to the work of advocates like Carl Hicks and the support of our champions in Congress.

» Check out Rino's 2012 blog post for more on Carl's testimony

» Investigators, read a pre-application announcement

Get Smart

Pediatric Webinar: Preparing for the School Year with PH

May 20, 7 p.m. ET/4 p.m. PT
Join education specialist Jeanne Kane as she discusses the effects of chronic illness on children’s school performance. She will also explain how to secure education accommodations to make school a safe and rewarding experience for your child. » Register now

Living Better with PH

Scleroderma and How It Affects Pulmonary Hypertension

May 13, 2 p.m. ET/11 a.m. PT.
Join Virginia Steen, MD, Professor of Medicine and Rheumatology Fellowship Director at Georgetown University Medical Center, as she discusses the risk factors for the various types of PH that can occur in scleroderma. She will also explain the unique characteristics of diagnosing and managing PH and scleroderma and how scleroderma affects the treatment of PH. » Register now

From the PHA News Desk

National PH Call-In Day Victory!

Reps. Peter Roskam (R-IL) and Peter King (R-NY) have become two early co-sponsors of the newest PH bill in Congress, and others plan to sign on as well. These developments were the result of PHA's National PH Call-In Day last week, when PHers urged Members of Congress to show support for the new Pulmonary Hypertension Research and Diagnosis Act by signing on as original co-sponsors. Stay tuned for more opportunities to get involved!

    Flames of Hope

There's Still Time to Light Your Flame of Hope!

Light your flame and add your message of hope to PHA’s Flames of Hope page by making a donation in honor or in memory of a loved one. Your contribution benefits PHA’s annual fund, which provides core PHA programs and services. Don’t wait – spread hope to support the fight against PH by lighting your flame in time for World PH Day May 5!

Medical Community Bulletin
    PHA Online University

PH and Heart Failure: A Case Study

May 8, 3 p.m. ET/12 p.m. PT
Left heart failure is the most common cause of PH and is associated with increased disability and mortality, yet it can be challenging to recognize and distinguish from right heart issues in PH. The prognosis and treatment are different. The use of selective pulmonary vasodilator therapies used to treat pulmonary arterial hypertension, a right heart disease, can lead to adverse outcomes in patients with left heart disease. Join Dana McGlothlin, MD, for this live webinar which will be accredited for up to 1.0 AMA PRA Category 1 CreditsTM. » Register now


Insurance Issues for the PH-Treating Medical Professional

May 16, 3 p.m. ET/12 p.m. PT
Want to learn more about how to overcome barriers to treatment created by your patients’ insurance providers? Join Sandra Coslet, RN, MSN, MBA; Helena Purl, RN, BSN, CCRC; and Glenna Traiger, RN, MSN, CNS-BC for a Q-and-A panel. The panelists will be prepared to address matters such as prior authorizations, Social Security Disability Insurance, financial assistance resources and the Affordable Care Act. » Register now

PH News Headlines

» PHA Campaigns to End Misdiagnosis; Philly Patient's Gala Reflects Impact of Disease on Young Mother's Life

» Double Lung Transplant Recipient Celebrates Two Birthdays

» More News

with PHA


Telephone Support

May 15, 2013
1:30 p.m. ET/10:30 a.m. PT

May 16, 2013
8:30 p.m. ET/5:30 p.m. PT

May 23, 2013
8 p.m. ET/5 p.m. PT

Upcoming Events

May 4, 2013
Pray PHor a Cure for Pulmonary Hypertension
Vinton, Iowa

May 5, 2013
Stride for a Cure
Glencoe, Ill.

May 11, 2013
4th Annual Race 2 Cure PH: Taylor Caffrey Memorial 5K
Anaheim, Calif.

» Go to the Events Calendar

Generation Hope Blog "Spring into Action!"
PHA Video Series on Associated Diseases

Need more information? Contact
Pulmonary Hypertension Association 801 Roeder Road, Ste. 1000 Silver Spring, MD 20910
Office: 301-565-3004 | Fax: 301-565-3994

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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.