PHA News
In This Issue
Conference is Next Week - Hope You Can Join Us
PHA Mid Year Report
Take Action for PH Research in Congress
Rep. Himes Co-sponsors PH Bill Due to Persistent PHer
PHer to Swim Mississippi River
First App for PH Launched
Generation Hope Apparel
30-City Medical Education Tour Coming to a City Near You
PH Research Opportunities
PH in the News
Quick Links
Donate Now
 
Sustainers Circle - Monthly Gift
Upcoming Events
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.
 
Lobby Locally! Visit Your Members of Congress without Leaving Your State
July 8, 2010
conference call
Vol 11/Number 12 June 14, 2010
PHA logoPHANews Editor - Sally Maddox
skshmaddox@yahoo.com
Contributing Editors - PHA staff
 
Next Issue of PHANews will be July 6
 
Due to PHA's International PH Conference and Scientific Sessions June 25-27 in Garden Grove, Calif., there will be no issue of PHANews on June 25. The next issue will be July 6, as we switch to a schedule of every other Tuesday, instead of Friday.
CONFERENCE IS NEXT WEEK - HOPE YOU CAN JOIN US!
9th International PH Conference and Scientific Sessions, Riding the Wave to a Cure, Garden Grove, California, USA, June 25-27, 2010
 
It's Not Too Late to Register for Conference
PHA will accept mailed, faxed and phoned-in pre-Conference registrations until June 22 at 3:00 p.m. ET. Onsite registration will be available but we can better plan for your attendance if you pre-register.
 
Download the print Conference registration form (PDF)
Phone: 301-565-3004 x764
Fax: 301-565-3994

networking with a medical professionalPower Breakfast: Network with a Medical Professional Topics Announced
The Power Breakfast on Saturday morning provides a unique networking opportunity for patients and caregivers to chat with medical professionals in a casual non-clinical setting about topics that interest them most.
 
Visit the Power Breakfast Topics page to preview topics that various expert medical professionals will be available to discuss during the breakfast.
 
Skill Building Workshop Schedule Expanded This Year
PHA's Skill Building Workshops are a great way to educate yourself and get empowered so you can help strengthen the PH community in your own way. PHA has responded to feedback from the 2008 International PH Conference and has scheduled two (as opposed to one) opportunities for you to expand your knowledge! Skill Building Workshop sessions will be held on Friday, June 25 from 9:15 a.m. - 10:15 a.m. and from 5:15 p.m. - 6:15 p.m.
 
WATCH OUR FIRST VIDEO MID YEAR REPORT
girl having fun at funwalkOur community's generosity has helped make a lot of things happen over the past six months. Watch PHA's 2010 Mid Year Report to learn how gifts to PHA make a difference in the lives of our community.
TAKE ACTION FOR PH RESEARCH IN CONGRESS
Lobby Locally! Visit Your Members of Congress without Leaving Your State

Thursday, July 8, 2010
8:00 p.m. ET
Conference call
Call in information: 1-866-740-1260, code: 1231383


Diane Ramirez, Cindy Pickles, Sen. Kay Hagan, Janet Cecil
Diane Ramirez, Cindy Pickles, Sen. Kay Hagan, Janet Cecil
Your elected officials work for you. Meeting with them to share your story is the most effective way to gain their support for the Tom Lantos PH Research and Education Act and other PH legislation. In August, Members of Congress work from offices in their states, which makes the summer a great time to schedule a visit.
 
Join this call to learn tips on how to make a successful and effective legislative visit and find out how PHA can help YOU advocate for PH research. Carl Hicks, Charlotte McCabe and Diane Ramirez will share how easy and essential advocacy is. PHA's Washington Representative, Gavin Lindberg, will be on hand to answer your questions about PHA's advocacy agenda.
 
Resources:
REP. HIMES CO-SPONSORS PH RESEARCH ACT THANKS TO PERSISTENT 435 CAMPAIGNER

 

Dick Tunstall with Rep. Jim Himes, Maureen Ferrara Higle (l) and Vivian Weiss (r)
Dick Tunstall with Rep. Jim Himes, Maureen Ferrara Higle and Vivian Weiss
Dick Tunstall, a member of PHA's grassroots advocacy network, the 435 Campaign, is an example of how persistence can pay off. In October, 2009, Dick met with Representative Jim Himes (D-CT) and requested his co-sponsorship of H.R. 1030, the Tom Lantos Pulmonary Hypertension Research and Education Act of 2009, but Dick didn't stop there! After that meeting, Tunstall worked consistently with Himes' office and as a result, on May 24, 2010, Representative Himes co-sponsored the bill.
Thanks to Dick Tunstall and all members of the PH community who dedicate their time to advocate with their Member of Congress about PH, we get one step closer to beating PH every day.
 
To learn more about the PH Research and Education Act and how you can advocate to your Member of Congress, visit the 435 Campaign website or contact Elisabeth at Advocacy@PHAssociation.org or 301-565-3004 x753.
LIL LONG TO SWIM MISSISSIPPI RIVER IN MEMORY OF BEST FRIEND
Best Friends are Those Joined at the EarLil Long and Nicky Roberts were best friends who grew up together and were "joined at the ear," as they would say. When they first met Lil had an earache in her right ear and Nicky in her left. And many years later they would develop pulmonary hypertension.
 
Lil didn't know she had PH until after Nicky's death when she was depressed and had gained 100 pounds, but she took inspiration from Nicky to get up and start exercising, and swimming was the only exercise she could do. She swam so much her husband said he thought she could swim the Misssissippi River by the next year.
 
Now Lil is proving her husband right by swimming the Mississippi River on September 4. She's also holding an awareness-raising fundraiser for PHA on July 31. The event will be held in Cleveland, Miss.
 
FIRST APP FOR PH LAUNCHED!
A new Pulmonary Arterial Hypertension Mobile Reference Guide, the first multimedia smart phone application with information on PAH disease, pathology, diagnosis and treatment guidelines for healthcare professionals has just been released by Actelion for iPhones and Blackberrys.
 
 
...And Another Launching at PHA Conference
 
The Insights Food & Fluid Daily Diary is a free application created for PAH patients by Gilead and will be available for download to the iPhone®, iPod touch® and iPad™. The app provides a practical tool for patients to track important health information and to share this information with those who are integral to their care, including their doctors.
 
The application will allow patients to record daily weight, symptoms, and food and fluid intake, generate reports that can be shared with their doctor, access low-sodium recipes and research the sodium content of common foods.
 
The app will be available at PHA's upcoming Conference. If you're not there, after June 27 go to www.insightsonpah.com to learn more about the app and then click through to download it from Apple's App Store™.
WEAR YOUR HOPE ON YOUR SLEEVE WITH GENERATION HOPE APPAREL
PHA's Generation Hope mugShow your support for Generation Hope, PHA's virtual support group for young adults with pulmonary hypertension, by purchasing one of the T-shirts, hoodies, mugs and more now available for sale in the Generation Hope Café Press shop. Ten percent of each purchase will be donated to PHA.
MEDICAL PROFESSIONALS: 30-CITY MEDICAL EDUCATION PROGRAM COMING TO A CITY NEAR YOU
PAH 30-City Medical Education Program: A Collaborative Approach for Clinicians on the Front Line
After a very successful first year, PHA is excited to announce that the 30-City Medical Education Program is coming to a city near you starting in June.
 
The 30-City dinner program, PAH 2010: A Collaborative Approach for Clinicians on the Front Line, is designed for health professionals who care for patients with or at risk for pulmonary arterial hypertension.
 
These events are FREE of charge, include a complimentary dinner and are approved for 1.5 AMA PRA Category 1 Credits™.
 
2010 Scheduled Programs to Date:
 
  • June 23 - Concord, NH
  • June 29 - Miami, FL
  • June 30 - Newport, RI
  • June 30 - Wilmington, DE
  • August 5 - Cheyenne, WY
  • August 12 - Grand Junction, CO
  • September 15 - Des Moines, IA
  • September 16 - San Antonio, TX
  • September 21 - Bethesda, MD
  • September 23 - Las Vegas, NV
  • September 29 - Charlottesville, VA
  • September 29 - Hershey, PA
  • September 29 - Short Hills, NJ
  • September 30 - Provo, UT
  • October 7 - Hartford, CT
  • October 14 - Boise, ID
  • November 9 - Uniondale, NY (Long Island) 
  • December 8 - Chico, CA
 
  Register Now 
Patients: Tell your primary care and other physicians about this educational opportunity for medical professionals.
 
Additional Programs Will Take Place In:
Dates will be announced soon
  • Dayton, OH  
  • Duluth, MN
  • El Paso, TX
  • Indianapolis, IN
  • Johnson City, TN
  • Louisville, KY
  • Memphis, TN
  • Portland, OR
  • Riverside, CA
  • San Juan, PR
  • Sioux Falls, SD
  • Tucson, AZ
 
This activity is jointly sponsored by the University of Michigan Medical School and the Pulmonary Hypertension Association. The 30-City Program is part of the PHA Medical Education Fund, sponsored at the Platinum Level by Actelion and Gilead and at the Silver Level by Pfizer and United Therapeutics.
MEDICAL PROFESSIONALS: PH RESEARCH OPPORTUNITIES
test tubes
Pfizer Announces New PH Research Award - ASPIRE Young Investigator Awards
 
The mission of the 2010 ASPIRE Young Investigator Awards in Pulmonary Vascular Disease Research is to advance the medical knowledge of fundamental mechanisms of disease, mechanisms of action of current and potential future treatments, and to improve the care of patients. Read more from Pfizer
 
Actelion Awards Grants to 2010 ENTELLIGENCE™ Young Investigators for Research in Pulmonary Arterial Hypertension (PAH)
 
Actelion Pharmaceuticals US, Inc. and the ENTELLIGENCE Steering Committee recognized five young researchers and their mentors for their efforts in advancing research in PAH. Each researcher will receive a 12-month mentored grant, funded through the ENTELLIGENCE program supported by Actelion.
 
PHA congratulates the 2010 award winners:
  • Eric Douglas Austin, MD, MSCI
    Vanderbilt University Medical Center
  • Angela V. Ghatnekar, PhD
    Medical University of South Carolina
  • Jason Gien, MD
    University of Colorado Health Sciences Center
  • Michael J. Passineau, PhD
    Allegheny General Hospital
  • Michael York, MD
    Boston University Medical Center
 
PH in the NewsPH IN THE NEWS
Pulmonary Hypertension Association Founder Dorothy Olson Featured in Her Local Paper
Dorothy Olson(Highlands Today) Sebring, Fla. - Dorothy Olson can't go anywhere without her oxygen tanks. She can't talk for more than 10 minutes without coughing. And being legally blind means she's only able to read through a closed circuit television video magnifier that amplifies texts to about 4 inches on a screen. Read Dorothy's story and how she helped co-found PHA | Read more about Dorothy on PHA's site
 
European Respiratory Journal Publishes Phase II Study of Investigational Oral Agent Riociguat in Treatment of Pulmonary Hypertension
(PR Newswire) - Bayer HealthCare Pharmaceuticals, Inc. announced that the study "Riociguat for chronic thromboembolic pulmonary hypertension and pulmonary arterial hypertension: a phase II study" was published online this week by the European Respiratory Journal. Riociguat (BAY 63-2521) is an investigational oral agent being studied for the potential treatment of PH that targets soluble guanylate cyclase (sGC), a receptor for nitric oxide (NO). Read press release 
 

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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.