PHA News
In This Issue
PH Doctor to Give Advice to SSA
Exercise & PH Webinar
PHA Expands Support to Caregivers and Families
Get Involved at Conference
Member Store Special for Spring
Orena Alsip Introduces Global Campaign in U.S.
New PH Online Support Group Chats in Spanish
Healthcare Reform & PH
PH in the News
Quick Links
Donate Now
 
Sustainers Circle - Monthly Gift
Upcoming Events
View event details and a complete list of upcoming events
 
Exercies & PH: The Risks and The Benefits
April 8, 2010
webinar
 
2nd Annual Scramble For A Cure April 17, 2010
Las Vegas, Nev.
 
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.
 
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.
Vol 11/Number 7
April 5, 2010
PHA logoPHANews Editor - Sally Maddox
skshmaddox@yahoo.com
Contributing Editors - PHA staff
 
Reaching over 6,500 subscribers
www.PHAssociation.org
Early-Bird Conference Registration Discount Extended Through April 7!
Don't miss your chance to receive your $25 early-bird discount. We will not be extending this pricing past April 7 so Register Now.
SOCIAL SECURITY ADMINISTRATION TO HEAR FROM PH DOCTOR ...AND YOU'RE INVITED!
Dr. Ronald OudizSince 2008, PHA has been working with the Social Security Administration to improve PH patients' access to disability benefits. Recently, the Social Security Administration (SSA) invited PHA's Scientific Leadership Council to make a presention on how to best include pulmonary hypertension in the SSA's Listing of Impairments used to determine if a patient is eligible for Social Security Disability.  
 
On April 7 at 10:30 a.m. ET, Dr. Ronald Oudiz (pictured above) will present to the Institute of Medicine committee charged with updating the Social Security Cardiovascular System Listings. The presentation will be via teleconference and is open to the public. Visit the Institute of Medicine's website to learn more about how to attend the meeting or contact Margaret at Insurance@PHAssociation.org or 301-565-3004 x773 for more information.
LEARN ABOUT THE RISKS & BENEFITS OF EXERCISING WITH PH
Exercise and PH: The Risks and the Benefits
Thursday, April 8, 2:00 p.m. ET
Webinar - Internet login AND phone call
 
 
Barbara Smithson, RN, MSNJoin PH Resource Network's Barbara Smithson, RN, MSN, for a presentation on how exercise affects the body and the specific limitations that go hand in hand with having PH. Barbara will discuss the risks and benefits associated with exercise by highlighting a research study that measured the effects of exercise in PH patients. Barbara will take participants' questions following her presentation.
 
PHA's monthly e-Learning Events are made possible through an unrestricted educational grant from Pfizer Inc.
PHA EXPANDS SUPPORT TO CAREGIVERS AND FAMILIES
Kerry BardorfPHA is proud to announce the launch of the Kerry Bardorf Family Support Program. With the addition of a new staff person this spring, we will be able to expand the services we offer to caregivers of both children and adults with pulmonary hypertension.
 
Caregivers provide the PH community with a backbone of support that often goes unheralded. This program is named for the late Kerry Bardorf (pictured), a PH patient who inspired those around her to make life better for others.
 
PHA has two email groups for you to connect with parents of PH children or to connect with other caregivers. Continue to check back to the Caregiver section of PHA's website as new resources and programs develop, or you can contact Emma for more information at Outreach@PHAssociation.org.
 
PHA is grateful to the Jansen Family Foundation for its support of the Kerry Bardorf Family Support Program. Kerry worked for five years for Mike Jansen, the co-founder and former CEO of ImageRight, who credits her with helping "make the company what it was."
GETTING INVOLVED AT CONFERENCE ADDS TO THE FUN
9th International PH Conference and Scientific Sessions, Riding the Wave to a Cure, Garden Grove, California, USA, June 25-27, 2010
 
Make attending PHA's International PH Conference even more fun by becoming a part of the activities and events. Here are some ways you can get involved at our Conference this June.
 
Volunteer to Help Out
At Conference, you can help prepare registration bags, serve as a room host or help out behind the scenes as your health and interests allow. To volunteer during Conference, just check the volunteer box on your Conference registration form or contact Volunteer@PHAssociation.org if you've already registered.
 
PHer shows off her pumpBuddy Up with a New PHriend
Pair up with another PHer at Conference to share the experience together. We're looking for new Conference attendees and those who have attended in the past who can show newbies the ropes. Sign up to become a Conference Buddy
 
Walk the Runway in the Fashion Show
Have a unique way of hiding, or flaunting, your pump or oxygen tank? We want you to show it off in our popular PH Fashion Show at the Saturday evening Founders' Dinner. All ages (especially children) are welcome to participate. Contact Jillian at Jillian@PHAssociation.org to walk the runway.
WE SAY 'THANK YOU' SO YOU CAN SAY 'THANK YOU'

Adrienne sig

Every quarter, PHA thanks its members by offering one of our popular store items at a discount. This quarter we are pleased to offer our new thank you cards as our show of gratitude. Designed by PH patient Kathy Levitt, these beautiful cards are available in packages of 10 featuring two designs for $12.

Through July 1, PHA members can purchase the cards for $9, a 25% discount.

Buy now

Not a member? Join PHA

ORENA ALSIP INTRODUCES GLOBAL PUCKERUP4PH CAMPAIGN IN THE U.S.
Amber NewbyOrena Alsip introduced the 2010 PuckerUp4PH Campaign in the U.S. last week in memory of her daughter, Amber Newby (pictured right), who passed away in January. Amber had a passion for saving other children with PH from being diagnosed too late. She and Orena worked together on a PH Awareness Week each year and Orena is determined to continue Amber's legacy. She chose this particular week because Amber's birthday is April 3.
 
PuckerUp4PH is a global attempt to set a Guinness World Record for the largest amount of blue lip prints. PuckerUp4PH originated in the United Kingdom and is coordinated by PHA-UK. It officially launches in May in 29 countries, but upon hearing Amber's story, the folks at PHA-UK decided they had to do what they could to celebrate her life and have featured on the PuckerUp4PH website.
 
Learn more about PuckerUp4PH | Read PHA's press release
NEW PH ONLINE SUPPORT GROUP CHATS IN SPANISH ON TUESDAY EVENINGS
PHA will begin hosting online support group chats in Spanish on Tuesday evenings at 8:00 p.m. ET. Please share the information below with Spanish-speaking PHers you know.

Nuevo  - Charlas en Línea de Grupo de Apoyo de Hipertensión Pulmonar  en Español los Martes en la Noche.
 
Catalina Lomeli y Edna Suárez Goodman serán anfitrionas de un grupo de apoyo de HP de charlas en linea  en español, todos los martes, a las 8:00 de la noche, comenzando el próximo martes 6 de abril.  Ellas se presentan a si mismas como sigue:
 
Catalina Lomeli"Me informaron que tenía Hipertensión Pulmonar en el 2003, pero fue confirmado en 2005.  Ahora uso Tracleer Remodulin intravenoso y Adcirca.  Me gusta bordar con cuentas  y estoy haciendo brazaletes y alfileres de HP.  Estoy asistiendo desde el 2006 a las reuniones del grupo de apoyo y hasta la fecha no he faltado ni una sola vez.  Me gustan mucho las charlas." - Catalina
 
Edna Suarez Goodman"Mi nombre es Edna Suárez Goodman, nacida en New York de padres puertorriqueños. Fui diagnosticada con HP hace cuatro años.  No uso medicamentos para la hipertensión pulmonar, pues tengo problemas con el lado izquierdo del corazón.  Espero que nuestro grupo de apoyo sea de ayuda para todos los pacientes de habla hispana." - Edna
 
Por favor, únanse a este grupo llamado Martes 8pm ET Grupo de Apoyo en PHA Chatroom.
HEALTHCARE REFORM & PH
The recently passed healthcare reform bill has many elements of interest to PH patients, caregivers, medical professionals and industry representatives. PHA's Washington Representative, Gavin Lindberg, has provided a helpful summary of points of interest to the PH community including a timeline for implementation.
 
Many of the insurance reforms in the legislation, such as limits on waiting periods and coverage caps, are supported by PHA and prioritized in our Statement of Principles on Healthcare Reform. We will continue to work with the PH community to improve access to PH therapy and other healthcare necessities.
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 5 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 
 

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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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.