May 2, 2012

PHA News, Pulmonary Hypertension Association, Empowered by hope
Blog Post from PHA's President
    Lucas Van Wormer

The Amazing Adventures of Steve and Lucas...

A few weeks ago, I wrote a blog titled Pediatric Research: The Power of One... and a Half. It told the story of Steve Van Wormer and his 10-year-old son Lucas and how they are building awareness of PH by creating public service announcements. This is a story of people fighting to make things better; it's a story well worth updating. » Read more

What's In This Issue

» Spotlight On... National PH Call-In Day
» Get Smart
» Living Better with PH
» PH Community Scoop

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

Spotlight On...
    PHA's National Call-In Day

Congressional Staffers "Inundated" with Phone Calls for a Cure

On April 26, 2012, PHers across the country spent the day calling their Members of Congress to urge them to co-sponsor the Tom Lantos PH Research and Education Act of 2011. Several PHers reported back to PHA that the staffers had received a flood of calls urging them to support more PH research and education. » Read more

Get Smart

Caregivers Webinar: Creative Expression as a Coping Tool

Wednesday, May 16, 8:30 p.m. ET/5:30 p.m. PT
Medical research shows that participating in a creative outlet - including writing, painting, photography and craft-making - can lead to improved physical, mental and emotional health. Join this webinar to discuss the benefits that creative endeavors can bring to your physical and mental well-being as caregivers. » Register now


Pediatric Webinar Series: Emergency Preparedness

Thursday, May 17, 8:30 p.m. ET/5:30 p.m. PT
When your child has PH, even simple medical procedures can become complicated. Brian Hanna, MDCM, PhD, and Steve Walker, MS, CRNP, will discuss anesthesia and surgery and the things to ask before PH kids undergo medical procedures. They will also offer recommendations on being prepared for an emergency situation. » Register now


Tips for Traveling with PH

Planning to attend PHA’s 10th International PH Conference or a summer getaway? PH does not have to hinder your travel plans! This recording from our last Conference shares tips for traveling, including information on traveling with oxygen. Planning ahead can take the stress and what-ifs out of traveling with PH. » Listen to recording

Living Better with PH

Make Small Changes to Improve Your Self-Image

On low-energy days, try telling family and friends “My body needs rest” rather than “I’m feeling lazy.” Replacing negative self-talk with judgment-free language that acknowledges your honest needs can improve your outlook and your quality of life. » Read more

PH Community Scoop
    World PH Day

World PH Day: May 5, 2012

The Asociación Nacional de Hipertensión Pulmonar of Spain (ANHP) has created World Pulmonary Hypertension Day to raise awareness of PH on a global scale. This event will consist of a Scientific Symposium on May 4, 2012, for PH physicians followed by World PH Day events on May 5 in Madrid, Spain. » Read more

    Event organizers and volunteers at the N.C. Cure PH Golf Tournament

Scrambling and Walking for a Cure

PHA extends a warm thank you to the following volunteer event organizers who had crowds across the country swinging their golf clubs and walking for a cure this month: 4th Annual Scramble for a Cure Golf Tournament (Las Vegas, Nev.); 2nd Annual Walk 2 Cure PH: Ellie Godina Memorial Walk (Euclid, Ohio); and N.C. Cure PH Golf Tournament (Mocksville, N.C.). » Learn more about planning your own event

From the PHA News Desk

Kick Back at Generation Hope After Dark at Conference

Join your Generation Hope peers (ages 20s-30s) for a casual reception and conversation at PHA's International PH Conference – Generation Hope After Dark event. Colleen Brunetti, fellow Generation Hope member, shares, “This event is a really great time to get to know some other patients in Generation Hope in an informal setting. It is nice to kick back after a day of meetings and seminars.” » Read more

    Sometimes It's PH

Why is PH a Zebra?

Doctors are taught: “When you hear hoof beats, think horses, not zebras.” Pulmonary hypertension is a medical zebra. PHA has big plans to raise PH awareness with front line medical professionals and the general public to make PH the zebra that every doctor knows about. Learn more about this new way that PHA is fighting PH and how you can support the fight for a cure.

Medical Community Bulletin

Webinar: 17-Beta Estradiol Attenuates Hypoxic PH via Estrogen Receptor-mediated Effects

Thursday, May 10, 2:00 p.m. ET/11:00 a.m. PT
In this webinar, Tim Lahm, MD, from Roudenbush VA Medical Center in Indianapolis, Ind., discusses his recent research involving 17-Beta Estradiol and the role it plays in tempering hypoxic pulmonary hypertension. » Register now


PHA Online University Course: PH-Specific Oral Therapy

Presented by Ingram Schulze-Neick, MD, PhD, at the 4th International Neonatal and Childhood Pulmonary Vascular Disease Conference, this course discusses the current oral therapies available for the treatment of pulmonary hypertension with specific attention paid to the evidence for use in pediatric patients where available. » Learn more


PHA Online University Course: PH-Specific Inhaled Therapy

Presented by Erika Berman-Rosenzweig, MD, at the 4th International Neonatal and Childhood Pulmonary Vascular Disease Conference, this course discusses the current inhaled therapies available for the treatment of pulmonary hypertension. Special attention is paid to the possibility for inhaled therapies to be used in critical care settings especially with pediatric and neonatal populations. » Learn more


Building Medical Education in PH Event in Colorado

June 6-9, Aspen, Colo.
The Thomas L. Petty Aspen Lung Conference “Mechanics and Mechanisms of Pulmonary Hypertension,” hosted by the University of Colorado, Denver, will emphasize the integration of basic, translational and clinical sciences and will focus on the utilization of new strategies and technologies to investigate the pathogenesis, treatments and outcomes of PH. Learn more about this event | Learn more about PHA's BME program

    Building Medical Education in PH

Building Medical Education in PH Event in Connecticut

Thursday, June 7, Norwalk, Conn.
The 6th Annual Pulmonary Hypertension Symposium, hosted by the Section of Pulmonary and Critical Care of the Department of Internal Medicine at Yale University, will expose the care provider to potential future therapies that are being actively explored as well as review the important elements in discerning PAH from other forms of PH. » Learn more

Also of Interest

The Social Security Scoop: Online Application Improvements

Adults filing for Social Security (SS) benefits online can now complete their applications online, rather than printing and mailing the final paper authorization form (Form SSA-827) to SS offices. This new feature streamlines the online application, which is already shorter than the paper application. » Learn more

¿Has Visto El Nuevo CuidadoDeSalud.Gov?

Este sitio de web provee información para entender la ley de cuidados de salud, recursos para explorar tus opciones de cobertura, un glosario, consejos para mantener la salud y más. » Visita el sitio

PH News Headlines

» New Data Released at ISHLT Meeting May Impact Treatment for Patients with PAH

» Pulmonary Hypertension Predicts Heart Failure after Acute Myocardial Infarction

» Pulmonary Arterial Hypertension - Phase III SERAPHIN Outcome Study Meets Primary Endpoint

» Pulmonary Hypertension Associated with Benfluorex Exposure

» Slices of Life: Sister's Online Initiative Helps Brother's Cause

» More News

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Upcoming Events

May 5, 2012
2nd Annual Rolling PHor a Cure Bunco Tournament
Ormond Beach, Fla.

May 5, 2012
Clothes for a Cause
Washington Depot, Conn.

May 6, 2012
Stride for a Cure 5K Walk/Run
Glencoe, Ill.

» Go to the Events Calendar

Video Spotlight

Soprano Sings About Importance of Organ Donation

View the “CBS This Morning” story of opera singer Charity Tillemann-Dick, a pulmonary hypertension patient who recently went through a second double lung transplant. » View the video

Generation Hope Blog: A Journey Not So Smooth
Table Talk: Wired

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.