PHA News
In This Issue
Registration Open for PHA on the Road
January e-Learning Events
"PHodcast" Debuts
Thank You! You have Lit the Flame of Hope!
New Resource on Insurance Coverage
Thirteen Our Journeys Stories Posted
PH in the News
PVRI Annual Clinical Debates
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Upcoming Events
A Cure For Five Pennies
January 31, 2009
Schaumburg, Ill.
1st Annual Scramble For A Cure Golf Tournament
April 18, 2009
Las Vegas, Nev.
Bowl PHor Cure
May 23, 2009
Wappingers Falls, N.Y.
Vol 10/Number 1 January 9, 2009
PHA logoPHANews Editor - Sally Maddox
Contributing Editors - PHA staff
reaching over 6500 subscribers

PHA on the Road: PH Patients and Families Education Forum -- A Program of the PHA Medical Education Fund

Join us as we visit 4 cities in 2009!
  • SOUTHERN CALIFORNIA -- Saturday, May 30, 2009
  • CENTRAL FLORIDA -- Saturday, June 6, 2009
  • NEW ENGLAND -- Saturday, June 13, 2009
  • SOUTHEAST MICHIGAN -- Saturday, June 13, 2009
PHA on the Road will present information on the mechanisms, diagnosis and treatment of PH in regional face-to-face settings. The goal of PHA on the Road is to increase patients' understanding of PH, and to educate patients on the programs and support offered by PHA.
Registration NOW OPEN. PHA on the Road is FREE for attendees, but registration is required.
For more information, contact Doreen Lucadamo at or 301-565-3004 x779.

Supplemental Security Income (SSI) and an Update on PH Treatments
Patients and Social Security: Navigating Supplemental Security Income (SSI)
Thursday, January 15
3:00 pm Eastern
Nathan BarkerJoin PHA's Nathan Barker and experts from the A.C.C.E.S.S. Coalition for a free webinar on Supplemental Security Income (SSI). SSI is a service of the Social Security Administration that provides assistance to individuals living on a low income who are over 65, disabled or under the age of 18. Participants will learn about their eligibility for SSI, how to apply for SSI, and how to appeal decisions made by the Social Security Administration. This presentation will be followed by a question and answer session, so come with questions!
PH Treatments: What's on the Horizon
Thursday, January 22
7:30 pm Eastern
Dr. Michael McGoonMichael McGoon, M.D., former PHA Board & Scientific Leadership Council chair, will give an update on PH therapies and new treatment options to watch for. The thirty minute presentation will be followed by a question and answer session.
PHA's monthly e-Learning Events series is made possible through unrestricted educational grants from Eli Lilly & Company and Pfizer Inc.
PHA is proud to present PH on Demand with Kirsten and Elise, a PH video podcast, or "PHodcast." Visit the PHodcast website's video player to watch the debut episode and check out the two pilot episodes shot at PHA's Conference in June. This is just the first of a series of PHodcasts that will debut every month over the next year!
PHodcast taping at ConferencePH on Demand, an online video program, is a new interactive support group for the PH community. Each episode will feature a guest from the PH community, including medical professionals, patients and caregivers, interviewed by hosts Kirsten Larson and Elise Pensavalle.
Be sure to come back to every month for more of this exciting new way to meet the PH community and let your voice be heard!

match lights PHA flame
As we ended 2008, we felt the warmth and generosity of PHA's community of hope. Despite media predictions that donors might not give during challenging economic times, you proved them wrong and came together in support of our common cause.
We are so gratified to let you know that we not only met (and then exceeded) the $40,000 End of Year matching gift challenge from Actelion and Pfizer, we also received more contributions at the end of 2008 than 2007. That tells us that what we do makes a difference to you.
We look forward to doing all that we can to make 2009 a year filled with hope for everyone whose life has been touched by pulmonary hypertension.
PHA has many resources regarding insurance coverage including an online insurance guide which is in the early stages of being updated. To that end, PHA's Education Committee of the PH Resource Network has developed template letters that address common insurance coverage issues such as medical necessity, coverage and payment requests.
These new template letters and other information can be found on PHA's website.
Thirteen new Our Journeys stories were posted to the PHA website in December! Visit the Our Journeys page to check out these and the nearly 200 other Journeys that have been shared by patients, caregivers, family members and medical professionals.
The stories of Our Journeys are a testament to the spirit of hope that binds the PH community together. They provide hope, information and a sense of community for PH patients all over the country and across the world.
To share your own story, fill out the Our Journeys story submission form and get to writing!
One Year Later: Family of Micro-preemie Celebrates Every Moment
(Osakis Review) -- According to Christa, the holidays were bittersweet - while celebrating the miracle of Danza, they still mourn the loss of her sister, Joely, who died January 3, 2008. She also noted the baby remains on oxygen due to pulmonary hypertension. Read article 
Lung Pathway Protects Against Cigarette Damage

(HealthDay News) -- Activating a pathway that protects against oxidative damage in the lungs protects the lungs of mice chronically exposed to cigarette smoke, and may be important in preventing emphysema and chronic obstructive pulmonary disease (COPD), according to a study published online in the Proceedings of the National Academy of Sciences. Read article

Stem Cells Poised to Grow Organs for Transplant
(Enhanced News Online) -- Physicians at the Dominican Republic division of Regenocyte announced clinical results of a 46-year-old patient with pulmonary hypertension who was treated with adult stem cells. Read article

The Pulmonary Vascular Research Institute (PVRI) will be holding its second Annual Clinical Trials Debate in Mexico City on January 28-29, 2009. The debates will be taking place right after the PVRI Annual General Meeting, which will be held January 25-27.
The Clinical Trials Debates are open to the public (for a registration fee), and will include discussion on Assessment of Novel Therapeutics  Debates on Clinical Trial, New Molecular Targets for the Treatment of Pulmonary Vascular Diseases and much more.
The Debates are meant to encourage open discussion between physicians, members of the regulatory authorities, and members from industry.


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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.