PHA News
In This Issue
Take Action for NIH Funding
Event Coordinators Think Outside Box to Promote Event
Thank you, May Event Organizers
Largest Conference Exhibit Hall to Date
Webinar for Newly Diagnosed Patients
PH Research Opportunity
PH in the News
Quick Links
Donate Now
Sustainers Circle - Monthly Gift
Upcoming Events
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.
 Asociacion 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.
8th Annual JFK Tower Golf Tournament
June 28, 2010
White Plains, N.Y.
Vol 11/Number 11 May 28, 2010
PHA logoPHANews Editor - Sally Maddox
Contributing Editors - PHA staff
Deadline Wednesday, June 9, 3:00 p.m. ET
By pre-registering for Conference you will receive your personalized packet of Conference resources, personalized name badge, Conference T-shirt size order and more. Guarantee yourself a speedy on-site check-in process at Conference.
Register Now
The NIH conducts critical research on pulmonary hypertension that improves the health and saves the lives of PH patients. The funding allocated to NIH has not kept pace with inflation and NIH is not as able to award grants to much needed medical studies. See how much funding your state got from the NIH in 2009
Take action now!
Senator Casey (D-PA), the Senate sponsor of the PH Research and Education Act, is circulating a letter requesting an 11.9% increase in funding for NIH for Fiscal Year 2011. Urge your senators to support NIH research by signing onto this letter before June 3.
Use PHA's talking points to contact your Senators today.
Take Action
Taylor's Wish on Angel's signShari and Michael Caffrey are leaving no stone unturned when it comes to promoting "Taylor's Wish," a 5K Run/Walk that honors their daughter Taylor, who recently died from pulmonary hypertension. The Orange County Register published a lengthy article promoting the event and memorializing Taylor, better known as Tay. The Caffreys have also had the opportunity to promote their special event on the Anaheim Angels Billboard and a large billboard above the 405 & 110 freeways in Southern California.
Thanks to Shari and Michael Caffrey and all members of the PH community who dedicate their time to raising awareness and funds, we get one step closer beating PH every day.
To learn how you can raise awareness of PH through the media, visit the PHAware Campaign website at or contact Elisabeth at or 301-565-3004 x753.
To learn more about hosting a special event, see the following article.
Radford Fun Walk for a Cure 2010A very special thanks to those who hosted special events in May. We congratulate the support groups, volunteers, speakers, organizers and participants for their valuable role in raising awareness and funds for pulmonary hypertension. Both events in May were brand-new and did a spectacular job of bringing the community together. We look forward to the opportunity to offer these events in years to come.
  • Inaugural Audacity Art Auction and Exhibit - Queens, NYC, N.Y.
  • Inaugural Radford Fun Walk for a Cure - Radford, Va.
It's Time to Make November "Event-ful"
Begin planning your PH Awareness Month special event today! With PHA's help and resources, hosting a fundraiser is as fun and easy as pumpkin pie. Get started by visiting PHA's online event planning guidebook and contacting Jessica McKearin, PHA's Special Events Manager, at or 301-565-3004 x765.
9th International PH Conference and Scientific Sessions, Riding the Wave to a Cure, Garden Grove, California, USA, June 25-27, 2010
exhibit boothPHA is pleased to announce that our 9th International PH Conference and Scientific Sessions will boast the largest exhibit hall in the history of PHA Conferences! Conference exhibitors provide attendees news about the latest products and most up-to-date PH-related information and resources.
Exhibitors include:
Accredo Health Group, Inc.
Actelion Pharmaceuticals US, Inc.
Caring Voice Coalition
CVS Caremark
Gilead Sciences, Inc.
IntraPump Infusion Systems
Pfizer, Inc.
Philips Respironics
Scleroderma Foundation
Smiths Medical
Social Security Administration
Teva Health Systems
United Therapeutics Corporation
On May 20, Glenna Traiger, RN, MSN, and PH patient and Helpline volunteer Merle Reeseman presented an e-Learning Event for newly diagnosed patients. They reviewed the basics of what every pulmonary hypertension patient should know about PH, treatment and coping with the disease. They also talked about PHA's services that are available 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.
test tubes
The Gilead Sciences Research Scholars Program in Pulmonary Arterial Hypertension provides financial support to three junior faculty researchers for a two-year period. Each award is funded up to $130,000, to be paid in annual installments of up to $65,000 per year for two years. Application deadline is August 14, 2010.
PH in the NewsPH IN THE NEWS
A number of articles came out the past two weeks about new PH research, many of which were presented at the American Thoracic Society (ATS) Conference.
Opera Singer Charity Sunshine Tillemann-Dick Back on Stage After Double Lung Transplant
(Fox 8 News) Cleveland, Ohio - A world renowned opera singer is performing for the first time since her double lung transplant. 26-year-old Charity Sunshine Tillemann-Dick developed a condition called pulmonary hypertension, which significantly slowed down her blossoming opera career. Charity performed publicly for the first time since her operation at the 2010 Patient Experience Summit at the Cleveland Clinic. Read article
Charity performed at two PHA events in the past - a charity concert at the Kennedy Center and Rockin' for the Cure at the 9:30 Club, both in Washington, D.C. Her grandfather was the late Rep. Tom Lantos. The PH bill in Congress is named in memory of his work in support of PH. Take action in support of the Tom Lantos PH Research and Education Act
Blue Kisses Raise Money for Sisters' Charity
(The Jewish Chronicle Online) United Kingdom - Two sisters have launched a world record charity attempt to raise awareness of pulmonary hypertension, an incurable lung condition which claimed the life of their sister. Prestwich-based teachers Kerry Freedman, 36, and Abbie Kohanzad, 28, donned blue lipstick in support of charity PHA-UK, which is hoping to get 40,000 blue lipstick prints across 23 countries to smash a Guinness world record.
PHA is joining PHA-UK in their PuckerUp4PH campaign. Be sure to visit the PuckerUp4PH kissing booth at our 9th International PH Conference and Scientific Sessions June 25-27.
United Therapeutics Launches Living PAH Program for Patients with Pulmonary Arterial Hypertension
(Business Wire) - United Therapeutics Corporation and Lung Rx, LLC announced the launch of a nationwide support program for patients who are currently prescribed a United Therapeutics therapy, which includes Remodulin (treprostinil) Injection, Adcirca (tadalafil) tablets or Tyvaso (treprostinil) Inhalation Solution. Visit PHA's website to learn more about this program and other pharmaceutical and specialty pharmacy company programs for PH patients 

How You Can Benefit by Giving Life Insurance 

Life insurance is a tool that can serve many purposes. When you donate the proceeds from a life insurance policy to charity during your lifetime, you receive an immediate income tax charitable deduction. Access PHA's E-learning brochure and learn three ways to help you arrange a gift of life insurance.

Visit PHA's Planned Giving website for more help navigating the many aspects of gift planning. 


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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.