April 6, 2011

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

Eating Bugs in Texas...

Last weekend, I was in Texas for The Woodlands CrawPHish Festival. It's a great event that started out in 2008 under my all-time favorite event name - the Cure PH Bug Boil. But there's more to the history. » Read more

What's In This Issue

» Spotlight On... Clinical Trials Law
» Get Smart
» Website Discoveries
» PH Community Scoop

» From the PHA News Desk
» Medical Community Bulletin
» Also of Interest
» PH News Headlines

Spotlight On...

New Clinical Trials Law to Benefit Rare Disease Communities

Thanks to your calls and emails, and the advocacy of other rare disease groups, the Improving Access to Clinical Trials Act (IACT) went into effect on April 4, enabling patients with rare diseases to enroll in compensated clinical trials without compensation counting against their Social Security Income or Medicaid eligibility income caps. » Learn more
Get Smart

e-Learning Event: Preparing a Successful Insurance Campaign

Wednesday, April 13, 3:30 p.m. ET, Webinar
Join Toni Heininger, Health Project Coordinator at University of Rochester, to learn about working with insurance companies to get PH treatments covered. Both patients and allied health professionals are encouraged to participate. » Learn more and register now


Parent Support Group Call: Summer Planning

Thursday, April 21, 8:30 p.m. ET/5:30 p.m. PT
Call in to swap tips for summer planning with other parents of kids who have PH. This conversation will be open for one hour; join us for as long as you’d like. Dial toll-free from the U.S. or Canada: 1-866-740-1260. When prompted, enter access code: 5653004. » Learn more


PHA on the Road Features Family Programming

This year, each PHA on the Road forum will feature a support group session for parents of children with PH as well as an information session led by an expert speaker. A “Kids’ Room” with activities and adult supervision while sessions are in progress will also be available. » Learn more

PHA Classroom: e-Learning Event Recordings

Missed an e-learning event? Have no fear – recordings of live e-learning events are posted in the recordings section of PHA Classroom after the event. Recent recordings include "PIM-1: A New Hope for the Diagnosis and Treatment of PH" and "PH Treatments: What’s on the Horizon." » Learn more
Website Discoveries

Things I Found by Kathryn Frix: PHA on the Road

This week my inspiration is from a post on the PHA discussion board. As I read the words of Felicia, a newly diagnosed woman in the Seattle area, I wanted to call her up right then and make sure she knew that PHA on the Road will be in the Seattle area in June. » Read more to find out where else we'll be

PH Community Scoop

Innovative Projects Funded through Lantos Awards

From the development of public service announcements to educational forums and everything in between, eight PH community members have been awarded funding through the Tom Lantos Innovation in Community Service Awards program, sponsored by Gilead. » Read about all eight projects

Walk 2 Cure PH: The Ellie Godina Memorial Walk

This Saturday, April 9, the Inaugural Walk 2 Cure PH will be held in Euclid, Ohio. The event celebrates the life of two and a half-year-old Ellie Godina, who lost her battle with pulmonary hypertension in 2010. » Read more

From the PHA News Desk

PHA Celebrates Volunteers

For more than two decades, non-profit organizations have been celebrating National Volunteer Week. From our founding in 1990 by four women around a kitchen table to today, PHA continues to be strengthened by the significant involvement of volunteers. » Read more

Save the Date: PHA's National Call-In Day is April 26!

Show Congress the PH community’s strength! Join us for PHA’s National Call-In Day on April 26. PHA will provide you with a simple script, so all you need is a few minutes to tell your senators and representative how they can help cure PH. » Learn more


PHA Ranked Among Top 2% of U.S. Charities

For the eighth consecutive year, PHA was recognized with a 4-Star (the highest) rating from Charity Navigator, an achievement reached by only 2% of charities in the U.S. This designation says that PHA “executes its mission in a fiscally responsible way,” according to Charity Navigator. » Learn more
Medical Community Bulletin

PHA Online University Course: WHO Group 2 PH

Hosted by Aaron B. Waxman, MD, PhD, this course discusses PH associated with diastolic heart failure by covering definition, epidemiology, physiology, evaluation, diagnosis and management. This course also features a case study. FREE CME credits are available after completion of a post-test and evaluation. » Learn more

Call for Abstracts: PH Professional Network Symposium

Help build the field of pulmonary hypertension! Submit your research abstracts for presentation at the 2011 PH Professional Network Symposium Poster Hall in September. Deadline for submission is June 1. » Learn more
Also of Interest

Sign Petition Opposing Cuts to NIH

PHA supports the National Institutes of Health (NIH) because the NIH funds research and programs that improve health and save lives, including the health and lives of PH patients. The Ad Hoc Group for Medical Research created a petition opposing cuts to NIH research in the federal budget. » Sign the petition

April is National Donate Life Month

More than 110,000 Americans, including PH patients, are waiting for organ transplants. » Learn more and spread the word about the need for organ donors
PH News Headlines

» AHA Addresses Severe Manifestations of Venous Thromboembolism, including Chronic Thromboembolic Pulmonary Hypertension

» Breathless, But Not From Asthma

» Hard to Breathe

» Teen Suffers Rare Illness

» Modesto Mom Gets New Heart

» More News

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Email a mentor. Patients and caregivers are ready to support you.

Upcoming Events

April 9, 2011
Walk 2 Cure PH Ellie Godina Memorial 5K
Euclid, Ohio

April 9, 2011
Spur a Cure for PH 2011
Phoenix, Ariz.

April 16, 2011
The 3rd Annual Scramble for a Cure Golf Tournament
Las Vegas, Nev.

» Go to the Events Calendar

Video Spotlight

Charity performs at TEDMED 2010

Watch as Charity Tillemann-Dick mesmerizes the audience with a beautiful aria and shares her story. Exactly one year ago to the day of this TEDMED talk, Charity awoke from a coma after having a double lung transplant.

Patient-to-Patient Support Line

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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.