March 9, 2011

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

We will miss you, Lynda...

John McInnis, a PHA Mentor, wrote to PHA staffer Emma Bonanomi Sunday night with the very sad news of his wife, Lynda Bériault's passing. Lynda organized the first Quebec support group and was a founding director of PHA Canada and a dedicated advocate for PH patients in Canada, the U.S. and beyond. She was a friend and we will miss her. » Read more

What's In This Issue

» Spotlight On... PHA on the Road Registration
» Get Smart
» Website Discoveries
» PH Community Scoop

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

Spotlight On...

PHA on the Road: Registration Open!

Registration is now open for the PHA on the Road forums in Seattle (June 4), Pittsburgh (June 11), St. Louis (June 11) and Minneapolis (June 18). These FREE forums provide PH education through interactive presentations, education sessions, exhibits and more. » Register now

Get Smart

Parents Support Group: Building Community Awareness About Your Child's Medical Condition

Thursday, March 17, 8:30 p.m. ET/5:30 p.m. PT, Webinar
Call and log in to learn how PHA can support you in raising community awareness about your child’s medical condition. » Register now


PIM-1: A New Hope for the Diagnosis and Treatment of PH

Friday, March 25, 2:00 p.m. ET, Webinar
Recently, Dr. Sebastien Bonnet discovered the PIM-1 protein, a protein virtually unseen in individuals who don't have PH but detectable in PH patients. Dr. Bonnet will discuss his research and the relationship between PIM-1 and PH in patients. » Register now

Media Matters: Working with the Media to Raise Awareness

Monday, March 28, 3:00 p.m. ET, Webinar
Join Environics Communications and learn how to use the media to your advantage when raising PH awareness in your community. Get tips on spotting media opportunities, pitching your story, giving an interview and more. » Register now
Website Discoveries

Things I Found by Kathryn Frix: PHA Classroom

For this edition of Things I Found on PHA's Website, I did not search for the resource; I knew exactly where it was. I 'found' one of my favorite PHA resources: PHA Classroom. For years, we have had recordings from events available on the website, but now they are so easy to find. » Read more

PH Community Scoop

2011 CrawPHish Festival is Right Around the Corner!

Alligator and crawfish … for lunch? That’s what more than 2,000 people feasted on at last year’s The Woodlands CrawPHish Festival. See what the event organizers have in store for this year. » Read all about it!


Want to Start a Support Group? Check Out PHA's Leader Manual!

PHA has coordinated patient-led support groups for more than two decades. We’ve packed everything we have learned into the “Support Group Leader’s Manual.” Don’t reinvent the wheel! Find out more about starting a group | Request a manual
From the PHA News Desk

Patients and Parents, Help Us Help You! Survey Closes March 16!

Newly diagnosed patients, young adults, patients with associated diseases, and families of children with PH, we want to hear from you! Tell us how we can serve you better before our survey closes on March 16. » Fill out our survey


Calling All PHA Poets!

Celebrate the heart and soul of PHA with an original poem (4-8 lines long) that highlights PHA's mission. The top poem will be submitted to the Heart and Soul Grant Competition and could win funding for PHA’s programs and services. » Email your poem to by March 16
Medical Community Bulletin

PHA Online University Course: Thoracic Transplantation for PAH

Hosted by Murali Chakinala, MD, FCCP, this course provides an overview of the history, indications, timing, options and outcomes for lung transplantation in patients with PAH. This course is available for FREE CME credits with completion of a post-test and evaluation. » Learn more
Also of Interest

New Lipgloss to Support PH Research

Figure model, dancer and make-up artist, Elise Firestone, counts herself lucky that her PH hasn’t kept her from pursuing her dreams. In February, Elise introduced the latest product in her cosmetics line — a lipgloss, with 20% of the proceeds supporting PH research. » Learn more

PH News Headlines

» Community Fundraiser "Spur a Cure" to Benefit Rare Disease

» "Pulmonary Hypertension... A Breathtaking Disease" European Awareness Campaign Launched on Rare Disease Day

» More News

Connect with PHA

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

Upcoming Events

March 11, 2011
4th Annual Fish Fry
San Diego, Calif.

March 17, 2011
PHA Parents Webinar
webinar: online and phone

March 18-20, 2011
Posh Little Closet Consignment Sale
Ormond Beach, Fla.

» Go to the Events Calendar

Video Spotlight


Watch this video from the PuckerUp4PH Campaign: three ladies, one mission and it all starts with blue lipstick. See how members of our community helped break the Guinness World Record for blue lip prints.

Quick Poll

How many PHA Classroom sessions have you participated in (live or recorded)?

» Take our Quick Poll!

Building Medical Education in PH

Legacy of Hope Society

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.