PHA News
In This Issue
July e-Learning Events
We Have a Disease to Cure - Support Research
Over 1,250 Conference Registrants Rode the Wave to a Cure
PHA on the Road is Back
New Dates in 30-City Medical Education Tour
New Insurance Resources
Healthcare Reform Updates
Thanks to June Event Organizers
Patient's Awareness Efforts Reach Public, Press and Congress
PH in the News
Quick Links
Donate Now
Sustainers Circle - Monthly Gift
Upcoming Events
Lobby Locally! Visit Your Members of Congress without Leaving Your State
July 8, 2010
conference call
My Loved One Has PH: A Caregiver's Toolbox
July 13, 2010
Put the Special in Special Events: PHA Local Event Planning & Fundraising 101
July 22, 2010
Vol 11/Number 13 July 7, 2010
PHA logoPHANews Editor - Sally Maddox
Contributing Editors - PHA staff
Look for Redesigned PHANews Next Issue!
PHA News screenshotNot only do we have a brand new website design, our e-newsletters have a vibrant new look too. When PHANews arrives in your Inbox in two weeks, you will see exciting new colors (pictured right) and each issue will be jampacked with new content and features about the latest news in the PH community. The new PHANews includes sections such as "Get Smart" with information on medical education, "Living Better with PH" with tips for patients and caregivers, "PH Community Scoop" with updates from the community such as support group news and special events, and much more.
From this point forward, look for PHANews in your Inbox every other Tuesday.
Also be on the lookout for new styles on our other e-newsletters, including Advances in PH, Advocacy Action Alerts, D.C. Metro Volunteers and Media Action Alerts. Sign-up for PHA email lists
This month we have three exciting e-Learning Events lined up for you...
lobby visitLobby 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

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, making the summer a great time to schedule a visit.

Learn more about Lobby Locally conference call

Mary Bartlett, MS, RN, CS, FNPMy Loved One Has PH: A Caregiver's Toolbox
Tuesday, July 13, 2010
1:00 p.m. ET
Webinar: web AND phone login

Join Mary Bartlett, MS, RN, CS, FNP, for a free, hour-long webinar covering the basics of what every family member and friend should know about pulmonary hypertension, treatment and coping as a caregiver.

Jessica McKearin, PHA Special Events ManagerPut the Special in Special Events: PHA Local Event Planning & Fundraising 101
Thursday, July 22, 2010
2:00 p.m. ET
Webinar: web AND phone login
Whether you are thinking about hosting an event, are currently planning your first fundraiser, or are an old hand at gathering your community together to raise funds and awareness, new and exciting information about PHA's Special Events program will be presented. We will also offer an inside look at Sphere, our newest resource for online event registration and fundraising.
PHA's monthly e-Learning Events are made possible through an unrestricted educational grant from Pfizer Inc.

And there's only one way to achieve it - through research. PHA's mission statement affirms our intention to find ways to prevent and cure pulmonary hypertension. We continue to support the vital and important work of PH researchers because we know that one day research will lead us to a cure.

But we can't do it alone. By donating to PHA's research program you help us get one step closer to the day when no one suffers from pulmonary hypertension.
Donate to Research 
PHers out at pool Patient and Caregiver Meet and Greet
Record numbers took part in PHA's 9th International Pulmonary Hypertension Conference and Scientific Sessions June 25-27. More than 1,250 registrants, including patients, family members, medical professionals, exhibitors and international attendees, spent the three-day weekend immersed in education, uplifting presentations, networking and enjoying the PHriendship and sense of common purpose experienced at Conference.
What's next? Lots!
PHA on the Road: PH Patients and Families Education Forum; A program of the Pulmonary Hypertension Association Medical Education Fund 
After four successful stops in 2009, PHA on the Road: PH Patients and Families Education Forum is back this fall! PHA on the Road, a program of the PHA Medical Education Fund, is a free educational event with interactive presentations, education sessions, exhibits and more.
Patients, caregivers and medical professionals have the chance to connect in new areas of the country. This year, two events have been scheduled. Visit PHA on the Road to find out more. See you there!
PAH 30-City Medical Education Program: A Collaborative Approach for Clinicians on the Front Line
PHA has announced new dates for the 30-City Medical Education program, PAH 2010: A Collaborative Approach for Clinicians on the Front Line. The program 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:
  • August 5 - Cheyenne, WY
  • August 12 - Grand Junction, CO
  • August 24 - Johnson City, TN *NEW
  • August 26 - Louisville, KY *NEW
  • September 1 - Memphis, TN *NEW
  • 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 - Dayton, OH *NEW
  • October 7 - Hartford, CT
  • October 12 - Portland, OR *NEW
  • October 14 - Boise, ID
  • October 19 - Indianapolis, IN *NEW
  • November 9 - Uniondale, NY (Long Island) 
  • November 10 - Tucson, AZ *NEW
  • December 8 - Chico, CA
    Note: Chico, CA has been rescheduled to
  • November 9, 2010
  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
  • Duluth, MN
  • El Paso, TX
  • Riverside, CA
  • San Juan, PR
  • Sioux Falls, SD
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.
Medicare Basics page screenshot
You can now find three new sections in PHA's Online Insurance Guide:
  • Check out our newly expanded Financial Assistance section, with links to programs that provide general financial assistance as well as links to drug-specific Patient Assistance Programs.
  • Find resources, charts and diagrams to help you understand your Medicare coverage in the Understanding & Choosing Your Insurance: Medicare section.
  • Visit the interactive Patient Victories section to read how patients and caregivers have conquered their personal insurance challenges. Then, leave a comment or share your own victory story.
Department of Health and Human Services Offers Website on Healthcare Reform
Still confused about what healthcare reform means to you? Visit the recently-updated where you can learn more about the Patient Protection and Affordable Care Act, find answers to specific healthcare reform questions and search for insurance coverage options.
High Risk Insurance Pools Begin July 1
As of July 1, 2010, the government will start paying for new high-risk insurance pools aimed at providing relatively affordable coverage for uninsured people with pre-existing conditions until the insurance exchanges begin operation in 2014. The pools will have no restrictions based on pre-existing conditions; coverage starts immediately and comes with no annual or lifetime limits.
Potential enrollees are encouraged to research your state's plan details, gather your medical records and apply early. Read more
Michelle Sweitzer, Betty Lou Wojciechowski and Mark WojciechowskiPHA special events organizers and volunteers are truly remarkable people! The passion, dedication and tireless spirit they put forth in planning their events is extraordinary. Our heartfelt thanks are extended to those who planned June events. We appreciate your commitment to finding a cure!
  • Race 2 Cure PH-The Taylor Caffrey Memorial 5k Run/Walk (Anaheim Hills, Calif.)
  • 2010 Swing 4 the Cure-Wojo PH Golf Classic (Tustin, Calif.) (Michelle Sweitzer, Betty Lou Wojciechowski and Mark Wojciechowski above)
  • 2010 JFK Tower Golf Tournament (White Plains, N.Y.)
Interested in planning your own event but don't know where to begin? PHA's Special Events team is here to answer your questions and provide you with resources and support along the way! Inquire today and find out how you can make November's PH Awareness Month event-ful. Contact Jessica at or 301-565-3004 x765.
Paul Cubelis, Rep. Tim Ryan, Merle ReesemanWhen Merle Reeseman (right with Paul Cubelis and Rep. Tim Ryan) received an invitation to educate members of the United Auto Workers (UAW) about PH, she expected an audience of 100 people, tops. She created a short presentation that shared her story and encouraged UAW members to contact their senators and representatives about the Tom Lantos Pulmonary Hypertension Research and Education Act of 2009. Merle's willingness to make the most of opportunities paid off in a big way when her audience turned out to be more than 800 UAW representatives and several Members of Congress!
Merle wrote about her experience in her June 8 blog post. Her story also appeared on local television station WFMJ and in the Grove City, Pennsylvania Allied News. Both new pieces highlight Merle's receipt of the Outstanding PH Citizen Award at PHA's recent biennial International PH Conference.
PH in the NewsPH IN THE NEWS
Vallerie McLaughlin, M.D., Earns Pulmonary Hypertension Excellence Award
(University of Michigan Health System) - The award from the Pulmonary Hypertension Association highlights physician commitment to patient care and research for a rare, difficult-to-treat condition. Read press release 

Golfers Raise $40,000 to Fight Lung Disease
(The Orange County Register) - More than 100 golfers participated in the "Swing 4 the Cure - Wojo PH Golf Classic" at the Tustin Ranch Golf Club to raise money to fight pulmonary hypertension. The event was named in honor of Mission Viejo resident Betty Lou Wojciechowski's husband, Jerry, who died from the lung disease. Two of the Wojciechowskis' sons also died as a result of pulmonary hypertension. Read article 
Fighting an Invisible Killer
(The Australian) - It has been labelled the invisible illness. When Jenny Hodges was diagnosed with pulmonary hypertension at 29 she'd never heard of it, despite her background in nursing. Read article 

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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.