May 16, 2012

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

World PH Day … A First Among Many

As a community grows, it develops traditions and opportunities. The First World PH Day – celebrated on May 5, 2012 – offered both of those. As patient and medical leaders from five continents gathered in Madrid, Spain for the Scientific Session and Celebration, I couldn’t help but think of how far we’ve come in so few years. » Read more

What's In This Issue

» Spotlight On... NORD Honors PHA
» Get Smart
» Website Discoveries
» PH Community Scoop

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

Spotlight On...
    National Organization for Rare Disorders

NORD Honors PHA for Leadership in the PH Community

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award for outstanding leadership and representation of our members in education and advocacy. Roughly 500 members of the rare disease community came together on May 15 to recognize outstanding Members of Congress, the NIH, as well as companies and organizations that strive to improve the lives of people with rare diseases. » Read more | Details about the award

Get Smart

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


No Support Group in Town? Pick Up the Phone!

Thursday, May 24, 8:00 p.m. ET/5:00 p.m. PT
It always helps to have someone else to talk to, someone who understands what it’s like having PH. Can't make it out to a local support group meeting? Support is only a phone call away with PHA’s monthly Patient Telephone Support Group. » Register now For assistance, call Debbie Castro at 301-565-3004 x755.

    Understanding the Emotional Impacts of Transplant 

Understanding the Emotional Impacts of Transplant

Wednesday, May 30, 2 p.m. ET/11 a.m. PT
Considering transplantation can be challenging and stressful, and you may experience many emotions when your doctor begins discussing transplant as an option. Join social workers Allyson Rupp and Sheri Lusk in this webinar as they discuss the emotional impacts of undergoing a transplant evaluation and answer questions about coping during the transplant process. » Register now 

Website Discoveries
    Table Talk: Wired

Things I Found by Kathryn Frix: Table Talk: Wired

This week I found a resource that will be a joy to read today, and will just keep on getting better in the weeks to come. I found Table Talk: Wired, the Conference blog. Even as I say "weeks to come," it is hard to believe Conference is so close! » Read more

PH Community Scoop
    Jammin' For a Cause

Jammin' for a Cause

Congrats to the Sarasota PH community for partnering with Keller Williams Realty’s “Team Guardian Angels” to put on a successful fundraising brunch on Sunday, May 6, raising thousands for PHA. » Read more


An Event-ful Spring Weekend

PHA extends a warm thank you to our volunteer event organizers who had crowds springing into action for a cure on May 5 and 6! The events include 2nd Annual Rolling PHor a Cure Bunco Tournament (Ormond Beach, Fla.); Clothes for a Cause Benefit Fashion Show (Washington, Conn.); Stride to the Cure PHA 5K Walk/Run (Chicago, Ill.); and Jammin’ for a Cause (Sarasota, Fla.). » Learn more about planning your own event

From the PHA News Desk
    Conference Advocacy Challenge

PH Community More Than Halfway to Reaching PHA’s Conference Advocacy Challenge Goal

Since January, PH community members have contacted their Members of Congress 562 times requesting co-sponsorship of the Tom Lantos Pulmonary Hypertension Research and Education Act. Each message will be counted in PHA’s Conference Advocacy Challenge: From a Kitchen Table to Congress» Help us reach our goal of sending 1,000+ messages to Congress!

    Christina Doak

A Mother Shares Her Experiences as Veteran of Four Conferences

PHA's 10th International PH Conference in Orlando will be here before we know it. I’m sure parents are mulling over the decision to attend, but for me it is an easy decision. I will be taking my family to Orlando for my fifth Conference and their fourth. There is no other venue at which a family dealing with PH can receive the same kind of support, emotional connection and education. » Read more on the Conference blog


PHA Recognizes Outstanding Members of the PH Community!

Year after year, PHA is grateful for how much our community members do to support the fight against PH. Our 2012 winners are a group of dedicated and passionate patients, caregivers and medical professionals who are inspiring and exemplary members of our community! » Read more about the 2012 winners

Medical Community Bulletin

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 distinguishing PAH from other forms of PH. » Learn more

PH News Headlines

» Delicate Heart Surgery Stops Blood Clots, Saves Jean Magazzu's Life

» PH Patient Awaiting Lung Transplant Finds New Hobby

» Fiery Fighter

» FDA Safety Concerns on New Obesity Drug: Fen Phen Lawsuits

» More News

Connect with PHA

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Upcoming Events

May 19, 2012
American Thoracic Society's 6th Annual Free Patient Forum
San Francisco, Calif.

June 2, 2012
3rd Annual Race 2 Cure PH: Taylor Caffrey Memorial 5K
Anaheim Hills, Calif.

June 2, 2012
3rd Annual Bocce for Better Breathing Tournament
Medford, Mass.

» Go to the Events Calendar

Video Spotlight

PH patient Shannon O'Donnell and her friend discuss their upcoming trip to PHA's International PH Conference.

View this short video blog created by 18-year-old Shannon O’Donnell and her best friend Jen in which they talk about their friendship, the magic of Conference, and their plans to participate in the PH Fashion Show. » View this video blog

Generation Hope Blog



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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.