January 11, 2012



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

Making a Big Noise for Big Change...

Remember the famous question, Would there be a noise if a tree fell in the forest and no one was around to hear it? I've often thought that our challenge with PH is like that. Without an awareness among our neighbors and fellow citizens of what PH patients and their families are going through, how can we be heard? » Read more

What's In This Issue

» Spotlight On... Register for Conference
» Get Smart
» Living Better With PH
» PH Community Scoop

» From the PHA News Desk
» Also of Interest
» PH News Headlines

Spotlight On...
    Get Ready for PHA’s 10th International PH Conference and Scientific Sessions

Registration for PHA’s Conference is Now Open!

PHA’s 10th International PH Conference and Scientific Sessions brings together patients, family members and medical professionals from around the globe, making it the largest PH community gathering in the world. Highlights include networking opportunities, patient education and dedicated education sessions for medical professionals. Register now and receive an early-bird discount of $25. » Learn more and register

Get Smart
Join us for one or more of these free webinars!
    Planning your Spring Special Event

Spring into Action: Planning Your Spring Special Event

Thursday, Jan. 12, 3 p.m. ET/12 p.m. PT
This webinar will unravel the mysteries of the PHA Special Event planning process, including how to get started, tips and timelines. We will also discuss PHA Special Event resources, including our online Event Organizer Resource Center, Facebook and FirstGiving for online registration and fundraising. » Register now

    Apply for the Lantos Awards Webinar

Help the PH Community Breathe Easier!

Wednesday, Jan. 18, 8 p.m. ET/5 p.m. PT
Do you see a challenge in the PH community and have an idea for how to solve it? Join this webinar to share ideas and hear from PHA staff about requesting a $5,000 Lantos PH Community Service Award to fund your idea. Award winners may even receive a $1,000 scholarship for PHA's International PH Conference! » Register now

    Parent Webinar

Nurturing Partnerships with Your Child's Medical Professionals

Thursday, Jan. 19, 8:30 p.m. ET/5:30 p.m. PT
Learn how to get the most out of your child’s time-limited medical appointments. Dr. Delphine Yung and Anne Davis, RN, will discuss strategies for communicating effectively with medical professionals, as well as methods for opening the channels of communication between your child’s primary care provider, PH team and other specialists. » Register today

    Webinar for Newly Diagnosed Patients

Webinar For Newly Diagnosed Patients

Monday, Jan. 23, 4 p.m. ET/1 p.m. PT
If you or someone you know was recently diagnosed with pulmonary hypertension, please join us for a webinar highlighting what every patient should know about PH, including treatment and coping with this disease. The facilitator, Lisa L. Roessel, FNP-BC, is the PH program coordinator at Legacy Clinic in Portland, Ore. » Register now

    Webinar for Newly Diagnosed Patients

Maintaining Relationships with Friends and Family After Diagnosis

Wednesday, Jan. 25, 2 p.m. ET/ 11 a.m. PT
A diagnosis of PH does not mean that relationships have to end, but many relationships will change during your PH journey. Join Ginny Maril, MPsy, as she discusses how you can maintain healthy and fulfilling relationships with your friends, spouse or partner and other family members post-diagnosis. » Register now

Living Better With PH
    Staying Active

Staying Active: Tips for Exercising

It’s a new year and if you are like many folks, you are making commitments to shed some unwanted pounds. Before you get started, discuss your exercise goals with your PH specialist to identify the right exercise regimen for you. » Read more about exercise and PH

PH Community Scoop
    Caregiver Telephone Support Group

Caregivers Telephone Support Group

Wednesday, Jan. 18, 1:30 p.m. ET/10:30 a.m. PT
Are you a caregiver to a PH patient? Call in toll-free to connect, learn and share strategies and experiences caring for an adult with PH. Calls are held on the third Wednesday of every month. » Learn more

    Telephone Support Group

Participate in PHA's Patient Telephone Support Group

Thursday, Jan. 26, 8 p.m. ET/5 p.m. PT
Want to chat with another patient? Can’t make it to a local support group meeting? PHA’s telephone support group helps those who can't make it to local meetings, whether because of health, work hours or distance. Interested in participating? Register online! For more information, contact

    New York Fun Walk

Waving Pom Poms for PH!

PHA extends a big thank you to Joanne Schmidt and her New York Fun Walk planning committee. On Dec. 10, 2011, more than 300 people gathered at Nassau Veterans Memorial Coliseum for the 7th Annual New York Fun Walk. Following the Fun Walk, many participants waved their periwinkle pom poms at the New York Islanders NHL Hockey game against the Pittsburgh Penguins — PHA was the “Charity of the Game.” 

From the PHA News Desk
    50-State Media Challenge

50 State Media Challenge Makes Huge Strides

In 2011, PHers appeared in online publications, local and national newspapers and TV news programs 144 times in 37 states across the country! Many of them were driven by a desire to ensure that their neighbors could put a face to pulmonary hypertension. » Read more

    Design your own Young Adult Support Group

Design Your Own Young Adult Support Group

Do you want to meet other young adults with PH? Check out this article written by Lindsay Collins, PH patient and support group leader. She shares tips on how to meet other patients your age and how to start a group in your neighborhood! » Check it out

    We Still Need Your Help to Make the Match

We Still Need Your Help to Make the Match

Even though 2012 has begun, PHA’s 2011 End of Year Appeal is still going strong! Make a gift today to ensure PHA receives the full $25,000 match from Actelion, our sponsor. Learn more about our End of Year Appeal | Give Today

Also of Interest
    Participate in the EveryLife Art Contest

Participate in the EveryLife Art Contest

Calling all artists, kids, parents, friends and family! Share your art that captures the beauty, power, love, pain and courage of the rare disease community. Two grand prizes will be awarded in each of three age groups. Entries must be received by Tuesday, Jan. 31, 2012. » Learn more | Share your entry with PHA

PH News Headlines

» France OKs United Therapeutics IV Treatment

» Citing Conflicting Data, FDA Recommends No Change in Use of SSRIs in Pregnancy

» More Than Breathless - One Mom's Story

» Montana Hope Project Sending Clinton Girl to Disney World

» Dasatinib Could Increase Risk for Pulmonary Hypertension

» More News

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Upcoming Events

Jan. 11, 2012
Registration opens for PHA's 10th International PH Conference and Scientific Sessions
Orlando, Fla.

Feb. 17 - 18, 2012
British Columbia Pulmonary Hypertension Society - 11th Annual PH Symposium
Vancouver, Canada

  Feb. 18, 2012
Strut Your Stuff Against PH
Wilkes Barre, Pa.

» Go to the Events Calendar

Video Spotlight

60 Minutes

This video segment, entitled “Stem Cell Fraud,” recently aired on 60 Minutes and speaks to the risks of medical interventions for which the science is not proven. » Read more and watch the video

Read this week's Generation Hope blog post "A New Year, Get Active!"
Planning a party? Don't forget to invite PHA!

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.