PHA News
In This Issue
New PH Treatment
Information and Support for New Patients
Parent-to-Parent Telephone Support Group Meetings
Healthcare Reform and Medicare
Special Events Spring into Awareness-Raising Action
Scientific Sessions Advance the Education of Medical Professionals
PH in the News
Quick Links
Donate Now
 
Sustainers Circle - Monthly Gift
Upcoming Events
 Audacity: Fundraiser and Silent Auction
May 21, 2010
Jamaica, N.Y.
 
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 9April 29, 2010
PHA logoPHANews Editor - Sally Maddox
skshmaddox@yahoo.com
Contributing Editors - PHA staff
 
Reaching over 6,500 subscribers
www.PHAssociation.org

PHA Phones and Email Will Be Down Friday Afternoon, April 30

PHA logo climbing stairsOn Monday, May 3, PHA will be settling into Suite 1000 of our current building, 801 Roeder Rd, Silver Spring, MD 20910. During the move, PHA's phones and email will be down starting at 1 p.m. ET the afternoon of Friday, April 30. We expect to be fully operational on Monday morning. PHA's toll-free patient-to-patient Helpline 1-800-748-7274 will remain available throughout the move.
NEW PH TREATMENT! NEW FORM OF EPOPROSTENOL NOW ON THE MARKET
Actelion Pharmaceuticals US, Inc. announced the commercial availability of Epoprostenol for Injection, formulation of epoprostenol that is stable at room temperature, for the treatment of primary pulmonary hypertension and pulmonary hypertension associated with scleroderma spectrum of disease in NYHA Class III and Class IV patients. Read press release 
 
Other PH Treatments Currently on the Market in the U.S.
Ambrisentan (Letairis®)
Bosentan (Tracleer®)
Conventional Medical Therapies
-- Calcium Channel Blockers (CCB)
-- Digoxin
-- Warfarin (Coumadin®)
-- Diuretics
-- Oxygen
Epoprostenol (Flolan®)
Iloprost (Ventavis®)
Sildenafil (Revatio®)
Tadalafil (Adcirca®)
Trepostinil (Remodulin®/Tyvaso™)
INFORMATION AND SUPPORT FOR NEW PATIENTS
Newly Diagnosed? What You Need to Know
Thursday, May 20, 3:00 p.m. ET
Webinar - web login AND phone call 
 
Register Now 
 
If you or someone you know was recently diagnosed with pulmonary hypertension, this free webinar is for you.
 
Glenna Traiger, RN, MSNGlenna Traiger, RN, MSN has been working with pulmonary hypertension patients for over a decade. During the call, she will review the basics of what every pulmonary hypertension patient should know about PH, treatment and coping with this disease. PH patient and Helpline volunteer Merle Reeseman will review PHA's patient services to help new patients benefit from ongoing education and support as they adjust to life with PH.
 
PHA's monthly e-Learning Events are made possible through an unrestricted educational grant from Pfizer Inc.
DIAL IN FOR PARENT-TO-PARENT SUPPORT
PHA Parents Monthly Telephone Support Group Meetings
 
Ava, daughter of Mitzi LaBargeFirst Meeting:
Thursday, May 27, 8:30 p.m. ET/5:30 p.m. PT
 
Instructions to call in:
Dial toll-free from the U.S. or Canada: 1-866-740-1260
When prompted, enter access code: 4850777
 
PH parents across the U.S. and Canada are invited to dial in to a toll-free telephone support group for caregivers of children with pulmonary hypertension. The first in a monthly series, this hour-long conference call will give PH parents the chance to connect in real-time for support, encouragement and information sharing.
 
View more information on PHA's family programs
DECIPHER THE CODE - TOOLS TO HELP YOU UNDERSTAND HEALTHCARE REFORM AND MEDICARE
If you are one of the nearly 45 million Americans on Medicare, you might have some questions about how healthcare reform is going to affect your Medicare coverage over the coming years. Medicare Rights Center recently created two timelines to help beneficiaries understand how reform will affect their coverage. The timelines cover changes to Medicare and the eventual phase-out of the Medicare Part D doughnut hole.
 
SPECIAL EVENTS SPRING INTO AWARENESS-RAISING ACTION!
2010 Scramble for a CurePHA extends a hearty thank you to our March and April special events organizers. These events heralded the arrival of spring with unique and determined efforts to raise both awareness and funds for PH! The events were planned by a community of dedicated volunteers, event organizers, and fundraisers who "rocked out," scrambled, partied New-Orleans style or donned their best pair of cowboy boots - all for a cure!
  • The Woodlands Crawfish Festival - The Woodlands, Texas
  • Rock Your Heart Out for PH - Atlanta, Ga.
  • 2nd Annual Scramble for a Cure - Las Vegas, Nev.
  • 4th Annual Spur a Cure for PH - Phoenix, Ariz.
Are you interested in springing into action by hosting a special event fundraiser in your community? Get connected with resources by contacting Jessica McKearin, PHA's Special Events Manager, at 301-565-3004 x765 or Events@PHAssociation.org. Learn more about organizing an event
SCIENTIFIC SESSIONS ADVANCE THE EDUCATION OF MEDICAL PROFESSIONALS
9th International PH Conference and Scientific Sessions, Riding the Wave to a Cure, Garden Grove, California, USA, June 25-27, 2010
 
Dr. Gregory ElliottPHA's International PH Conference and Scientific Sessions provides a valuable continuing medical education (CME) opportunity for PH-treating medical professionals. On Friday, the Scientific Sessions Inflammation and Growth Factors in PAH will feature a day-long program of advanced professional education for doctors, nurses and other allied health professionals presented by experts in related fields who are applying their knowledge to the study of PH.
 
Scientific Sessions Highlights:
  • Scientific Sessions and PH Clinicians and Researchers Dinner Forum - Thursday evening, June 24
  • PH Resource Network Dinner Forum: Interprofessional Collaboration and PH Team (ideal for your nurse, respiratory therapist or other for allied health professionals) - Thursday evening, June 24
  • Scientific Sessions - Friday, June 25
  • Clinical Track Courses - Saturday, June 26 and Sunday, June 27
  • Over 70 Abstract Posters in the areas of clinical science and research
  • CME and Nurse CE credit available!
Learn more about the Scientific Sessions
(and the three new clinical track CME courses offered on Saturday and Sunday), and don't forget, pre-Conference registration ends June 9!
 
Patients: Please pass this information on to your medical professional.
PH in the NewsPH IN THE NEWS
Research Presented at ISHLT Meeting Shows Promise to Improve Outlook for Lung Transplant Patients
(PRNewswire) - A new technique that uses gene therapy to help repair damaged lungs previously found unfit for transplant shows promise for addressing the critical shortage of healthy donor organs. Read article 
 
Hello Kitty Dream Comes True for Girl with Pulmonary Hypertension
(Thurrock Gazette) United Kingdom - Brave little Paige Wilson, who suffers from pulmonary hypertension, was whisked off to Harrods in London to meet her idol Hello Kitty, courtesy of the charity Rays of Sunshine. Read article
 
Health Wise Segment Features Pulmonary Arterial Hypertension
    
North Carolina support group leader Doug Taylor reported to us that WTVI in Charlotte, N.C., had a recent program on pulmonary arterial hypertension (PAH). Host Joey Popp interviewed cardiologist Theodore Frank, MD, and pulmonologist Doug Kelling, MD, as well as local PH patients (and twins) Linda Miles and Brenda McCallum. Watch hour-long video segment
 

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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.