PHA News
In This Issue
New PH Treatment Approved by FDA!
Announcing 2009 Research Grant Winners
What's a Bug Boil & What Does it Have to Do with Curing PH?
PHA On the Road Recordings Posted
Fun in the Sun at MN Picnic
All Natural Does Not Mean All Safe
PHA's Insurance Survey Closing Aug 15
PH in the News
BME in Florida Aug 29
Cool Off with a PHA Water Bottle
Latest Planned Giving e-Brochure
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Support Group 101: How to Start a Support Group
August 20, 2009
Webinar
 
Second Annual Painting a Stroke of PHenomenal Hope
September 12, 2009
Okla.
 
Support Group 101: How to Start a Support Group
September 17, 2009
Webinar
 
CAPHS Third Annual Let's Walk & Roll Event
September 19, 2009
Ohio

Third Annual Maine "Swinging for a Cure" Golf Tournament and PH Forum
September 19, 2009
Maine
 
2009 N.C. Cure PH Golf Tournament, Raffle and Silent Auction
September 26, 2009
N.C.
Vol 10/Number 16 August 7, 2009
PHA logoPHANews Editor - Sally Maddox
skshmaddox@yahoo.com
Contributing Editors - PHA staff
 
Reaching over 6,500 subscribers
www.PHAssociation.org
NEW PH TREATMENT APPROVED BY FDA!
Tyvaso, which is inhaled treprostinil, was approved by the Food and Drug Adminstration (FDA) on July 30 for the treatment of pulmonary arterial hypertension. United Therapeutics plans to launch the drug in September. Read more UT's Adcirca (tadalafil) was also approved by the FDA in May. Read more
 
PH Treatments Currently on the Market in the U.S.
Ambrisentan (Letairis TM)
Bosentan (Tracleer®)
Conventional Medical Therapies
-- Calcium Channel Blockers (CCBs)
-- Digoxin
-- Warfarin (Coumadin®)
-- Diuretics
-- Oxygen
Epoprostenol (Flolan®)
Iloprost (Ventavis®)
Sildenafil (Revatio®)
Trepostinil (Remodulin®)
PHA's treatment fact sheets are available online.
PHA IS PROUD TO ANNOUNCE THE 2009 RESEARCH GRANT AWARD WINNERS!

beakersThrough PHA's three Research Grant Programs, PHA and our partners have committed over $7.5 million to PH research to date. Contributions from the PH community, including funds raised at Special Events, help make funding these research initiatives possible. We thank those who have contributed to PHA research grant programs!
 
And the winners are...
 
2009 Pulmonary Hypertension Association/American Thoracic Society Partnership Grant for Pulmonary Hypertension
  • Ari Zaiman, MD, PhD, Johns Hopkins University, School of Medicine
  • Lunyin Yu, MD, Massachusetts General Hospital
2009 Postdoctoral Fellowship Awards
  • Revathi Rajkumar PhD, University of Pittsburgh
  • Gregg Stashenko, MD, Duke University, Durham
2009 Mentored Patient-Oriented Research Career Development Award (K23)
  • Stephen Mathai, MD, Johns Hopkins University, School of Medicine
WHAT'S A BUG BOIL & WHAT DOES IT HAVE TO DO WITH CURING PH?
boy holding crawfishA bug boil is another name for a crawfish boil, yum! Jack and Marcia Stibbs and the CurePH Committee held their 2nd Annual Texas CurePH Bug Boil on April 18 where they raised over $28,000 for PH research, getting us that much closer to a cure.
 
Blessed with great weather, the event featured music and games, including crawfish races!
 
The event photographer got some great shots of the day so check out the 2009 Bug Boil photo album on our website.
LISTEN UP! PHA ON THE ROAD RECORDINGS NOW ONLINE

PHA On The Road Logo
Video recordings from PHA on the Road: PH Patients and Families Education Forum general sessions are now available online.
 
Dr. James H. TarverThe video recordings feature PAH Diagnosis by Dr. James H. Tarver, who presented at the Central Florida Forum in Lake Buena Vista, Fla. on June 6. Additional webinar video recordings of PHA on the Road presentations are featured in the e-Learning Events section.
 
Don't forget, handouts and presentation slides from the four Forums are also available.
 
OVER 100 TURN OUT FOR FUN IN THE SUN AT MN PICNIC

MN support group

"Beautiful weather, great food catered from Tinuuic's and Jimmy John's sandwich shop, toys for the children and fun prizes -- we couldn't have asked for a better day," said support group Co-leader Stephanie Layer.

Dr. Michael & Bonnie McGoon were guests of honor, and Dr. Robert Frantz from the Mayo clinic and his wife made the trip up from Rochester.

Asked about why the day was so important, Stephanie said, "As we spend each day of our lives fighting PH, we need time to really enjoy where we have come from and where we are going, and be proud of what we have accomplished in our support group."

Visit the Minnesota Metro Area PH Support Group page to connect with the group

ALL NATURAL DOES NOT MEAN ALL SAFE

Boston.com recently featured an article about what you need to look out for when taking natural supplements.

"...There's also no guarantee that what you're buying will cure your cold, silence your arthritis, or calm your nerves. And it might even spark serious side effects -- especially if an otherwise innocuous herb is taken with a powerful prescription pill, producing a toxic brew."

pillsRead the full article for more on precautions you should take with natural supplements.

WHAT WOULD YOU CHANGE ABOUT PHA'S INSURANCE PROGRAM?
LAST CHANCE TO TAKE SURVEY!

PHA Insurance Program Survey
Closes August 15!
 
If you haven't already taken our insurance survey, this week is your last opportunity to do so. We invite anybody who has been affected by PH to contribute to the development of our Insurance Advocacy and Education Program by participating in this online survey.
 
The feedback you provide will help us expand our program and improve our Online Insurance Guide so we can better address your needs.
 
As a special thank you, all participants who complete the survey will have the opportunity to win a PHA Thank You Prize Package that includes Pulmonary Hypertension: A Patient's Survival Guide, a PHA water bottle, a PHA t-shirt and much more!
 
PH in the NewsPH IN THE NEWS
PH Patient Dreams Come True With Make-A-Wish Foundation
(PeninsulaDailyNews.com) -- Kendra Sullivan's weekend of fame -- granted by the Make-A-Wish Foundation -- was full of paparazzi and star treatment. Kendra was diagnosed with pulmonary arterial hypertension in 2006 after suffering from sleep apnea. Read article
SAVE THE DATE: AUGUST 29
BUILDING MEDICAL EDUCATION IN PH PROGRAM AT MAYO CLINIC IN FLORIDA

Medical ProfessionalsThe Mayo Clinic in Jacksonville, Fla. will partner with PHA to host the Pulmonary Hypertension Update 2009 on Saturday, August 29.
 
This is a one day course directed by Dr. Charles D. Burger, a PHA PH Clinicians and Researchers member, designed to improve and update the physicians' knowledge of the evaluation and management of pulmonary arterial hypertension (PAH). The afternoon session features case presentations and the opportunity for clinicians to hear directly from a PAH patient.
 
For registration information visit the PHA Building Medical Education in PH web page or contact 904-953-2944.
COOL OFF THIS SUMMER WITH A PHA WATER BOTTLE
PHA Water BottleFrom now through October 1, PHA members can purchase the PHA water bottle for the reduced price of only $5. This special, limited-time offer is only available for PHA members.
 
Order your water bottle through the PHA Online Store or call us at 301-565-3004. Not a PHA member? Visit the PHA Membership page to join PHA today! 
PRESENTING PHA'S LATEST PLANNED GIVING E-BROCHURE

2 Ways to Shape Your Favorite Cause's Future: The Power of Endowments and Memorials

Endowments and memorials provide a special opportunity to make a lasting difference for the causes you care about.  Learn how an endowment gift can provide income to support our mission each and every year. Learn too, how you can honor the memory of a loved one or the strength and courage of someone battling this disease with memorial gifts.

Check out this FREE brochure and many more free resources on PHA's Planned Giving website.


 

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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.