September 5, 2012

PHA News, Pulmonary Hypertension Association, Empowered by hope
Latest Blog Post from PHA's President
    Living life: Savanha, Katie Grace and Kathy

Living Life: Savanha, Katie Grace and Kathy ...

For her 14th birthday party earlier this year (and the previous two) Savanha Groebner asked friends and family members to make donations to PHA instead of giving her gifts. Savanha’s little sister, Katie Grace, has PH. This year, Savanha and her friends went around their town on a scavenger hunt. » Read more

What's In This Issue

» Spotlight On... Peek Family
Home Makeover

» Get Smart
» Website Discoveries
» PH Community Scoop

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

Spotlight On...
    Peek Family Wins Home Makeover Contest, Raises Awareness of PH

Peek Family Wins Home Makeover Contest, Raises Awareness of PH

An upstate N.Y. family found that winning a home makeover contest provided them with a rare and exciting opportunity to personally draw national attention to pulmonary hypertension. » Read their story

Get Smart
    PHA On the Road

PHA on the Road - New Brunswick Forum This Weekend!

PHA will be “on the road” in New Brunswick, N.J. this Saturday, Sept. 8 and limited on-site registration will be available. You won’t want to miss this FREE education and networking opportunity! Don’t forget: the next stop for PHA on the Road will be the Chicago, Ill., area on Oct. 13. » Learn more

Website Discoveries
    Spread the word about the Sometimes it's PH campaign

Things I Found by Kathryn Frix: Show Your Stripes

Show your awareness and support of PHA's early diagnosis campaign by sharing your zebra-related photos or art projects. Be creative, and spread the word! » Read more

PH Community Scoop
    Dial in for Telephone Support

Parents and Caregivers:
Dial In for Support

Mark your calendars for an opportunity to connect and share on PHA’s Telephone Support Groups! The meeting for parents will discuss a statement that the FDA recently released regarding the safety of Revatio® (sildenafil) for children ages 1 to 17. Dr. Dunbar Ivy of Children’s Hospital, Colorado will present on the FDA’s findings and the potential impacts on the pediatric PH community.
Caregivers – Sept. 19
Parents – Sept. 20

    PHers Drum Up Support for PH Bill

PHers Drum Up Support for PH Bill in Their Congressional Districts

"People probably think, 'What difference can I make?' Listen, I'm one person. I've been in that congressional office and I've gotten a Member of Congress to co-sponsor after my meeting. If you get to one person, you make a difference," Nicole Cooper said about gaining support for the Tom Lantos PH Research and Education Act. » Learn how

From the PHA News Desk
    Six Minute Marathon

Bring a Six Minute Marathon to Your Town

Want to raise awareness about PH with an activity that’s easy to understand? Consider holding a Six Minute Marathon this November for PH Awareness Month! It’s based on the six-minute walk test, a common metric used to evaluate the well-being of PH patients. Get started planning your event and bring us one step closer to a cure!

Medical Community Bulletin
    PHA Online University

PHA Online University:
New Look, More Resources!

PHA Online University — PHA's premier online educational and networking resource for medical professionals about pulmonary hypertension — has unveiled a new look! Covering topics from diagnosis and treatment to the latest advances in the field, the site offers CME courses, issues of PHA's quarterly medical journal, practice resources and much more. » Learn more at

Also of Interest
    Drug update

FDA Rejects Use of Revatio in Children

Last week the FDA recommended that children ages 1 through 17 should not be prescribed Revatio® (sildenafil) to treat pulmonary arterial hypertension, but advises patients currently on the drug not to stop or change the dose without first talking to a healthcare professional. Statement from FDA | Statement from the drug manufacturer (PDF)

PH News Headlines

» Golf Tournament to Benefit Pulmonary Hypertension Association

» More News

Connect with PHA

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

Upcoming Events

Sept. 8, 2012
PHA on the Road: PH Patients and Families Education Forum
New Brunswick, N.J.

Sept. 9, 2012
Pittsburgh Walking PHor a Cure
McCandless Township, Pa.

Sept. 13, 2012
Florida Academy of Cosmetic Dentistry Golf Tournament
Bay Lake, Fla.

» Go to the Events Calendar

Video Spotlight

Rare Documentary

Rare – a documentary airing on PBS – follows a mother whose daughter has Hermansky-Pudlak Syndrome (HPS) as she brings together a patient advocacy group and pushes for a cure for this rare genetic disease, which includes pulmonary fibrosis. We can certainly take some cues from this inspiring story! » Watch the trailer and check the schedule of local broadcasts

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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.