Nov. 1, 2012


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

Here Comes PH Awareness Month!

Every year PH Awareness Month becomes busier, with more opportunities to help our families, friends and neighbors learn more about pulmonary hypertension … but where did Awareness Month come from, how did it get started? » Read more

What's In This Issue
   

» Spotlight On... Online Awareness Day
» Get Smart
» Website Discoveries
» PH Community Scoop

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

Spotlight On...
    Online Awareness Day

PH Online Awareness Day – Worldwide Nov. 1

PH Awareness Month

Help us kick off PH Awareness Month around the world by taking action online. Participating is easy: we have plenty of ideas and sample messages for you to share through your social media outlets. Don’t use Facebook? You can share through email or by posting your story on our website. » Get started

Get Smart
    Social Security Administration

Don’t Be Spooked by Disability Benefits

Halloween may be full of goblins and ghouls, but applying for Social Security Disability (SSD) benefits shouldn’t give you goose bumps. The webinar Disability Assistance Step by Step: Preparing an Effective Application is now available online. Learn from Amy Jackson of the Caring Voice Coalition and Charlotte McCabe, a PH patient and successful SSD applicant, about navigating the application process. » Watch the recording

Website Discoveries
    Emergencies

Things I Found by Kathryn Frix: Preparing for Emergencies

When Hurricane Sandy headed toward us, emergency planning was a priority for many in the PH community. If we were not in the path of the storm, we were thinking of our PHriends who were, hoping they would be safe. » Read more

PH Community Scoop
    Congressional Luncheon

Last Chance to RSVP for PHA’s Congressional Luncheon on Nov. 13

PH Awareness Month

“Whenever we, the patients, can put a face to PH we have the potential to help many.” —Jeannette Morrill
RSVP for PHA’s Congressional Luncheon by Nov. 6 and help us put a face to PH on the Hill. No matter where you live, you can invite your Members of Congress to attend. » Learn more and RSVP

    Walking, Running and Sipping for a Cure!

Walking, Running and Sipping for a Cure

PHA extends a warm thank you to our volunteer special event organizers who united their communities in October to raise awareness of pulmonary hypertension:

  • Thirsting for a Cure - Newberg, Ore. 
  • 2012 Southwest Virginia PHun Walk for a Cure - Roanoke, Va. 
  • Smuttynose Rockfest Half/Full Marathon - Hampton, N.H. 
  • 9th Annual GA Fun Walk for a Cure - Marietta, Ga. 
  • 8th Annual New York Fun Walk - Lindenhurst, N.Y. 
  • Baltimore PH Walk for HOPE 2012 - Baltimore, Md. 
  • 2nd Annual Miles for Mallory - Minneapolis, Minn.
  • Ladies’ Night Out for PHA - Waterbury, Conn.

PH Awareness Month is here and we have 13 PHA Special Events scheduled across the country. To support an event near you, check out our list of upcoming events.

From the PHA News Desk
    Conference Theme Contest

Submit an Idea for the 2014 International PH Conference Theme Contest!

PHA needs your help! We’re looking for an inspiring theme for our 11th International PH Conference and Scientific Sessions, which will take place on June 20 - 22, 2014 in Indianapolis, Ind. The winner of the Conference Theme Contest will receive a complimentary registration to this one-of-a-kind event. Submission deadline is Dec. 15. » Learn more

Medical Community Bulletin
    PHA Online University

Missed a Live Webinar? Get Up to Speed

Recordings of the latest live webinars from PHA Online University are now available. Check them out at: www.PHAOnlineUniv.org

Also of Interest
    Advocate for the Scleroderma Research and Awareness Act

Scleroderma Foundation Congressional Call-in Day

Did you know that 8 to 12 percent of scleroderma patients develop PAH? The Scleroderma Foundation is hosting its Congressional Call-in Day on Wednesday, Nov. 14. Join them in calling Congress and requesting co-sponsorship of the Scleroderma Research and Awareness Act. While you’re at it, don’t forget to request co-sponsorship of the Pulmonary Hypertension Research and Education Act, too! More about the Scleroderma Act | More about the PH Act

PH News Headlines
   

» Microscopic Packets of Stem Cell Factors Could Be Key to Preventing Lung Disease in Babies

» New Treatment in Clinical Trial at Cleveland Clinic May Vastly Increase Number of Donor Lungs

» Vascular Endothelial Cells Play a Larger Role in Pulmonary Hypertension

» Drug Helps in Two Types of Pulmonary Hypertension

» 10 mg of Lung Drug Opsumit for Pulmonary Hypertension Reduces Mortality by 36 Percent

» TCT: Refractory PAH Responds to Denervation

» FDA Rejects United Therapeutics' Oral PAH Drug

» UC San Diego Sulpizio Cardiovascular Center Program Receives National Recognition

» Chartiy Tillemann-Dick: A Tale of Two Transplants

» Nike, Doernbecher Join Forces to Create Shoes, Raise Money

» Canton's Valley Ballet Dance Fitness Center to Host Fundraising Events in November

» Monday Motivation: Heart Scare Motivated Health Challenge

» More News

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Nov. 15, 2012
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Nov. 15, 2012
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Nov. 21, 2012
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Upcoming Events

There are tons of events happening across the country in recognition of PH Awareness Month. » Visit the Events Calendar for the complete listing!

Video Spotlight

McNiff Family Raises Funds for Pediatric PH Research

The McNiff family has raised more than $12,000 in honor of their young daughter Mimi, and in support of PHA's Robyn Barst Pediatric Research and Mentoring Fund. Featured in the video is Mimi's mother Britt, who ran the Smuttynose Rockfest Half Marathon in Hampton, N.H. to raise funds and awareness of pulmonary hypertension. » View the video

Read this week's Generation Hope blog post "Please Understand"
Are you a federal employee? Support PHA
You're not alone with PH: Learn how other patients and caregivers cope
 
 

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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.