PHA News
In This Issue
PH Acronym Decoder
FAQ for Newly Diagnosed Patients
PH and... Brochures for Patients with Associated Diseases
Your Gift Can Be a Lifeline
Pediatric & Family Programming at Conference
PHA Volunteers Make a Difference
Insurance Updates
Crawfish, Zydeco and Alligator? Oh my!
Invitation for Physicians and Researchers
PH in the News
We're Moving!
Quick Links
Donate Now
 
Sustainers Circle - Monthly Gift
Upcoming Events
4th Annual Spur a Cure for PH
April 24, 2010
Phoenix, Ariz.
 
Inaugural Southwest Virginia Funwalk for PH
May 22, 2010
Radford, Va.
 
International Conference on Pulmonary Circulation
June 2-5, 2010
Prague, Czech Republic
 
Race 2 Cure PH - The Taylor Caffrey Memorial 5K Run/Walk
June 5, 2010
Anaheim Hills, Calif.
 
 Sociacion Nacional de Hipertension Pulmonar: Annual Member Meeting
June 11-13, 2010
Marina D'or, Spain
 
It's All PHun & Games
June 20, 2010
Westminster, Colo.
 
PHA's 9th International PH Conference and Scientific Sessions
June 25-27, 2010
Orange County, Calif.
 
Swing 4 the Cure - Wojo PH Golf Classic
June 28, 2010
Tustin, Calif.

 

 

Vol 11/Number 8 April 19, 2010
PHA logoPHANews Editor - Sally Maddox
skshmaddox@yahoo.com
Contributing Editors - PHA staff
 
Reaching over 6,500 subscribers
www.PHAssociation.org
DEMYSTIFY "PH-SPEAK" WITH OUR NEW ACRONYM DECODER
investigator with magnifying glassAcronyms and shorthand are common among members of the PH community, but no one is born knowing the difference between your PAP and your PCP! Newcomers and old-timers alike can use this alphabetical list of PH-related abbreviations, adapted from a resource created by PHA Australia, to brush up on the "PH-speak" you run across in our online communities, at your local support group meetings or at the doctor's office.
 
FAQs FOR NEWLY DIAGNOSED PATIENTS
The first step to understanding your diagnosis with pulmonary hypertension is to find answers to your most urgent questions. Our FAQs for Newly Diagnosed Patients will help you build a foundation of information to make sense of your doctors' appointments and your own research.
 
PH AND... BROCHURES INTRODUCED FOR PATIENTS WITH ASSOCIATED DISEASES

PH and Scleroderma brochurePHA now offers a series of brochures that discuss the connection between pulmonary hypertension and the following: Hereditary Hemorrhagic Telangectasia (HHT), HIV, Liver Disease, Methamphetamine Use, Sickle Cell Disease and Scleroderma.

The PH and... brochures are available in two editions, one for patients and one for medical professionals. The patient materials, available online and under free materials in PHA's online store, educate patients with related illnesses and conditions about PH and the prevalence of PH in different disease states. The brochures for healthcare practitioners, available online, encourage medical professionals treating related illnesses to treat PH in partnership with a PH specialist.

For more information about PHA's programs for patients with associated diseases, contact Emma Bonanomi at Outreach@PHAssociation.org or 301-565-3004 x777.

YOUR GIFT CAN BE A LIFELINE

"Of all the assistance that has been offered, the support groups and PHA have made the most difference in my life." -Lindsay Collins, PH Patient

PHA works day in and day out to make a difference in the lives of patients like Lindsay.  We have become the lifeline for so many by providing education, networking opportunities and above all, hope for a cure for all who are touched by PH.
 
But we cannot do it alone.  By donating to PHA's spring fundraising appeal you help us get one step closer to the day when no one suffers from pulmonary hypertension.
 
Read more about how your gift can make a difference in the lives of our community
 
Donate now to become part of the fight against PH
CONFERENCE PEDIATRIC EDUCATIONAL PROGRAMMING & FUN IN THE KIDS' CABANA
9th International PH Conference and Scientific Sessions, Riding the Wave to a Cure, Garden Grove, California, USA, June 25-27, 2010
 
PH teens at PHA's 2008 ConferencePHA's 9th International PH Conference offers kids and teens and their families lots of opportunities for learning and fun throughout the weekend.
  • Pediatric Education - Attend sessions, meet-up groups and support group meetings for parents, kids, teens and family members.
  • Family Buddies - Request to be paired with a "Buddy Family" so you and your child can start making friends before Conference even begins.
  • Kids' Cabana - Register your kid(s) for the Kids' Cabana when you register for Conference. The room is for all children and teens (3-16 years of age; no diapers please) who accompany their parents to Conference.
  • Teen Volunteers - Teenagers ages 15+ can volunteer in the Kids' Cabana on Saturday and Sunday. Email Emma@PHAssociation.org to learn more and sign up.
  • Supervised Field Trips - Kids ages 5-12 will visit The Discovery Science Center and teenagers 13-19 will visit Dave and Buster's.

Contact Carsten Hailey at KidsRoom@PHAssociation.org or by calling 301-565-3004 x764 to RSVP for field trips or register for the Kids' Cabana if you've already registered for Conference.

Haven't registered for Conference yet? Pre-registration closes June 9. Register now

PHA VOLUNTEERS MAKE A DIFFERENCE

PHA Profiles Volunteers for Volunteer Appreciation Week

Conchita WatsonApril 18-24 is Volunteer Appreciation Week and PHA would like to take this opportunity to thank the many PHA volunteers who help out in a variety of ways - from Helpline volunteers and chat hosts to volunteer night workers and Pathlight writers. To give you an idea of some of the heroic work that is going on, we have posted stories of a few of our volunteers.

Read volunteer stories

Thanks to all our volunteers!

Inspired? Sign up to volunteer

HEALTH INSURANCE UPDATES

Making Healthcare Coverage Accessible to All: Department of Health and Human Services Calls on States to Build High Risk Pools
With the passage of the Patient Protection and Affordable Care Act, the U.S. Department of Health and Human Services (HHS) has taken the first step in implementing healthcare reform: establishing a temporary high risk pool program to expand access to healthcare coverage. The establishment of the high risk pools is intended to provide affordable insurance to individuals who cannot otherwise find coverage.
Read the entire press release and other updates from HHS| View PHA's Statement of Principles on Healthcare Reform

Social Security Administration Briefed by PH Expert
As part of PHA's ongoing work with the Social Security Administration (SSA) to improve pulmonary hypertension patients' access to disability benefits, Dr. Ronald Oudiz represented PHA's Scientific Leadership Council with a presentation to the Institute of Medicine (IOM) committee charged with updating the Social Security Cardiovascular System Listings on April 7. He presented on how to best include PH in the SSA's Listing of Impairments used to determine if a patient is eligible for Social Security disability.
Visit the IOM's website to view Dr. Oudiz's presentation and PHA's formal statement on disability in the meeting's presentations| Visit PHA's Online Insurance Guide

New Medicare.gov Site Makes Understanding Medicare Easier
The Centers for Medicare and Medicaid Services unveiled its new Medicare website, Medicare.gov, earlier this week. The new site offers improved usability and better navigation. Watch Secretary Sebelius's introduction to the new site

CRAWFISH, ZYDECO AND ALLIGATOR? OH MY!

sold out sign at Woodlands Crawfish FestivalThe Woodlands Crawfish Festival, held on March 27 in The Woodlands, Texas, brought raising PH awareness and funds for research to a whole new level! With nearly 2,000 people in attendance from the PH and general communities, this year's "bug boil" was the largest in its three-year history. Hosted by PHA Board of Trustees member Jack Stibbs and his family, this exciting New-Orleans themed event was so popular that it sold out!

Read more about the Festival online

INVITATION FOR PHYSICIANS AND RESEARCHERS TO EVENT AT ATS MEETING

Medical ProfessionalsActelion Pharmaceuticals US, Inc. and the ENTELLIGENCE Steering Committee cordially invite you to attend the 2010 ENTELLIGENCE™Young Investigators Award Ceremony to be held during the upcoming American Thoracic Society (ATS) meeting in New Orleans.

The event will take place -

May 17, 2010
Palace Cafe
605 Canal Street
New Orleans

Celebrate as the following 2010 award winners are honored for their outstanding initiative - Eric Douglas Austin, MD, MSCI; Angela Ghatnekar, PhD; Jason Gien, MD; Michael J. Passineau, PhD; and Michael York, MD.

Please confirm your attendance by emailing Diane Brenner at dbrenner@medtelligence.net by May 3, 2010. Please reserve early. Thank you. 

Learn more (PDF)

PH in the NewsPH IN THE NEWS
Child Recovering After Surgery to Treat Condition
(The Canon City Daily Record) Colo. - Brooklyn Clasby, 3, underwent surgery at Denver Children's Hospital to have a broviac tube inserted into her heart that will supply medication directly to her heart 24 hours a day for five to 10 years conservatively. Earlier this year, little Brooklyn told her mom, Jennica Clasby, that her "heart hurt," and after tests and exploratory surgery, Brooklyn was diagnosed with idiopathic (primary) pulmonary hypertension, in one of its most severe forms. Read article 
 
Surgery and Treatment Save Baby
(UKMedix News) United Kingdom - Sharice Dunnon, who has a hole in her diaphragm, nearly lost her life minutes after being born because when she tried to draw air into her lungs she began to suck her stomach into them, but thanks to surgery and the use of Viagra to enlarge her arteries she is now living normally. Read article
 
Homecoming: Banners, Cheers Greet Boy, 11, Who Underwent Double-Lung Transplant
(Telegraph-Journal) Canada - Less than seven months after undergoing a double-lung transplant, 11-year-old Braden Gendron ran down the road to his former school with his Grade 6 classmates just moments after arriving back in Hampton on Wednesday. It was something he had never done before with his friends. Read article 
 
WE'RE MOVING!
Adrienne sigThe Pulmonary Hypertension Association office is moving, but only up a few floors. We'll still be at 801 Roeder Road in Silver Spring, MD 20910, but we'll be in Suite 1000 starting May 1. Change your address books!

 

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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.