July 25, 2012

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

From a kitchen table to around the world...

Last year, Mike McGoon, our former Board and Scientific Leadership Council chair and a cardiologist specializing in PH at the Mayo Clinic, made a good point. "PHA has so many good videos but none of them tell our story. Wouldn't that be valuable?" » Read more and check out PHA's new history video

What's In This Issue
   

» Spotlight On... Fun Walks for a Cure
» 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...
    Fun Walks for Early Diagnosis

Highlighting Early Diagnosis at Awareness Month Fundraisers

This November, special events organizers across the country will let their communities know that "Sometimes it's PH." As part of PH Awareness Month and PHA's early diagnosis campaign, special events fundraisers will focus on the importance of early PH diagnosis. PHA's signature event, "Fun Walks for a Cure," will raise funds and awareness for PH. The more events that take place across the country, the farther our message will spread, so consider hosting a walk of your own. PHA will show you how. » Order a free Fun Walk for a Cure kit today

Get Smart
   

This Fall Tell Your Members of Congress "Sometimes it's PH"

When Members of Congress co-sponsor the Tom Lantos PH Research and Education Act, they take a stand for education and early diagnosis. This fall meet with your elected officials, share this message and ask them to co-sponsor the only PH-specific bill in Congress. Get started by watching PHA’s Lobby Locally Webinar or contacting Elisabeth at Advocacy@PHAssociation.org.

Living Better with PH
   

Teens Share Tips for Coping with PH

Teens are becoming independent, exploring new interests, busy with their social life – and coping with PH. We talked to teenagers living with PH and asked them to tell us about what they had to deal with. Check out these articles for their tips on life with PH. » Read on

PH Community Scoop
    Golfers at Swing 4 the Cure: Wojo PH Golf Classic

Special Events from Coast to Coast

PHA extends a warm thank you to our volunteer event organizers who gathered crowds to swing for a cure and enjoy a crab feast this month – all to raise PH awareness and funds for research and patient serving programs! The events include the Annual Crab Feast in Memory of Rick Page (Annapolis, Md.), the 2012 JFK Tower Golf Tournament (White Plains, N.Y.) and the 5th Annual Swing 4 the Cure: Wojo PH Golf Classic (Aliso Viejo, Calif.).

From the PHA News Desk
   

Get PH News Every Day!

Don't want to wait for your next PHANews email to hear about what’s going on in the PH community? PHA provides daily news, stories, event listings, educational information and ways to get involved through PHA Daily Beat: News for your Health and Heart. You can even subscribe via email or RSS. » Get the news!

Medical Community Bulletin
   

Medical Professionals: Check Out These Upcoming Webinars

Are you a medical professional looking to attend a live webinar? PHA Online University’s upcoming webinars include topics like Palliative Care and PH Patient and Medical Professional Involvement in Support Groups. » Check out our current list to learn more!

Also of Interest
   

FDA Safety and Innovation Act Becomes Law

President Obama signed the FDA Safety and Innovation Act into law this month. The bill provides significant incentives for the development of drugs and devices for the rare disease community. » Learn more
PH News Headlines
   

» Lexapro Investigation Reveals Severe Side Effects and Birth Defects Such as Persistent Pulmonary Hypertension of the Newborn

» Teenage PH Patient Meets His Heroes (UK)

» More News

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Upcoming Events

July 27-29, 2012
Scleroderma Foundation National Patient Education Conference
Grapevine, Texas

July 28, 2012
Country Happenings PHun Walk
Brant, Mich.

Aug. 4, 2012
CAPHS 6th Annual Walk and Roll
Akron, Ohio


» Go to the Events Calendar

Video Spotlight

The Power of One: From a Kitchen Table to Around the World

Watch the 2012 Conference Highlights Video to experience the excitement surrounding the education and many other activities at PHA's 10th International Pulmonary Hypertension Conference and Scientific Sessions. » View the video

Generation Hope Blog
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NORD

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.