PHA News
In This Issue
Action Alert - Medicare Benefits
30-City Medical Education Program
Ask A Pediatrician
UK Victory
New Benefit for PHA Members
Southeast Michigan PHA on the Road
Merle Reeseman Raises Awareness
New PAH Book Available
Dorothy Bradley Celebrates 10 Years
PH in the News
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Sustainers Circle - Monthly Gift
Upcoming Events
  
1st Annual Scramble for a Cure Golf Tournament
April 18, 2009
Las Vegas, Nev.
 
 Crawfish and a Cure: 2nd Annual CurePH Bug Boil
April 18, 2009
Houston, Texas 
 
Spur a Cure 2009
May 2, 2009
Phoenix, Ariz.
 
Beef and Beer Fundraiser
May 8, 2009
Philadelphia, Penn.
 
 2nd Annual Bocce for Better Breathing
May 9, 2009
Medford, Mass.
 
Putt - Putt Fore PH
May 16, 2009
West Jordan, Utah
 
 2009 Carolina's 5K PH Run/Walk for a Cure
May 17, 2009
Clemmons, N.C.
 
Bowl PHor Cure
May 23, 2009
Wappingers Falls, N.Y.
Vol 10/Number 8 April 17, 2009
PHA logoPHANews Editor - Sally Maddox
skshmaddox@yahoo.com
Contributing Editors - PHA staff
 
reaching over 6500 subscribers
www.PHAssociation.org
Take ActionSUPPORT EQUAL ACCESS TO MEDICARE BENEFITS!

 
I can no longer work due to PH. To continue my health insurance I am now paying $500 per month instead of the $72 per month that was my premium before I had to stop working ... I have no idea how I will be able to continue to pay the $500 COBRA payment while waiting the 24 months for Medicare. The 24-month waiting period is a death sentence. -Fern Engle
 
When health challenges force PH patients to leave their jobs, they may become eligible for Social Security disability income (SSDI). However, SSDI recipients are not eligible for insurance coverage through Medicare until 24 months after receiving their first disability income benefit. For some individuals living with disabilities, this can mean hundreds of thousands of dollars in medical costs they cannot cover. For others, it means risking their lives by discontinuing treatment.
 
PHA, and more than 120 other organizations, are working together to end this injustice. As members of the Coalition to End the Two-Year Wait for Medicare, we are building co-sponsorship of the Ending the Medicare Disability Waiting Period Act (H.R. 1708, S. 700). You can help.
 
Support equal access to Medicare benefits for disabled recipients:
Medical ProfessionalsFREE CME/CEU PROGRAM IS ON THE WAY!

 PAH09, PHA 30-City Medical Education Program, A Program of the Pulmonary Hypertension Association Medical Education Fund

The PHA 30-City Medical Education Program, a program of the PHA Medical Education Fund, is bringing free medical education to your area!
 
The FREE CME- and CEU-eligible sessions are for physicians and other health professionals who want to learn more about caring for patients with PAH.
 
Developed by PHA's Scientific Leadership Council, the highly interactive evening sessions will build links among community PAH specialists, non-specialists, and the nearest established PAH center to create new avenues for communication and more comprehensive, state-of-the-art care for patients with PAH. 

Our first event took place April 15 in Merced, Calif. The upcoming April events are:
  • Montgomery, Ala.-  April 21
  • Appleton, Wisc.- April 29
  • Scranton, Penn.-  April 30

Please pass this invitation along to your colleagues in these locations and encourage your medical professionals to attend!

 
Look for more information on the additional 26 Sessions coming soon.
ASK A PEDIATRICIAN Q&A CHAT WITH DR. ERIKA BERMAN ROSENWEIG
e-Learning Event Series
 
Tuesday, April 21     
7:00 p.m. ET
Q&A Online Chat

Although evaluation and treatment for children with PH is similar to the approach taken with adult patients, children with PH are significantly different than adults. As with all PH patients, the approach to treatment for PH in children must be individualized. This session will focus on unique challenges and strategies for helping kids with pulmonary hypertension. Come with questions about being or raising a young PHer!
 
Learn more and join Ask a Pediatrician Q&A chat
 
Coming in May...
Simple Safety Tips for Summer
 
PHA's monthly e-Learning Event series is made possible through unrestricted educational grants from Eli Lilly & Company and Pfizer Inc.
UK PH COMMUNITY ACHIEVES CRITICAL VICTORY IN DEFENDING ACCESS TO TREATMENT

PHA congratulates PHA-UK and the UK PH community for defeating a proposal that could have meant the complete withdrawal of a range of important PH treatments and compromised the country's eight PH centers.
 
The UK campaign garnered the support of 32,000 petition-signers, including PH-treating clinicians, parliamentary advocates and friends from around the world. PHA-UK's success not only safeguards the health and well-being of PH patients in the UK, but gives hope and encouragement to PHers across the globe who face the prospect of similar restrictions and challenges. The proposal was finally defeated on April 6, little more than a year after the initial proposal was made.
 
Learn more about how the UK community defended access to life-saving PH treatments.
NEW BENEFIT FOR PHA MEMBERS!

PHA Car Magnet

Being a member of PHA just got better! Each quarter we will feature a special discount on one item in the PHA Store. This quarter's featured item, the PH Awareness Magnetic Car Ribbon, is now available to PHA members for 40 percent off until July 15.
 
To learn more about becoming a member, or to renew your membership, please visit the membership page.
SPOTLIGHT ON SOUTHEAST MICHIGAN PHA ON THE ROAD FORUM
Sign Guy - PHA on the Road Logo

Join PHA in Dearborn, Mich., on Saturday, June 13, at The Dearborn Inn for the third of the 2009 PHA on the Road: PH Patient and Families Education Forums!
 

Specialized session topics at this event include:
  • "What is on the Horizon for PAH?" with Vallerie V. McLaughlin, M.D.
  • "Would You Like to Be In a Clinical Trial? What You Need to Know as a Patient!" with Marsha Burks, R.N.
  • "Eating Better to Improve Your Health" with Patricia Fantuz, R.N.
  • "How Do I Explain to My Family that I Have PH?" with Robert Schilz, D.O., Ph.D.

In the afternoon, attendees can participate in "The Right to Fight Back," a session on how individuals can promote PH awareness, featuring local PH patients Merle Reeseman and Joyce Loeck. Also included at the forum are the "Journeys" Luncheon, a PHA Conference favorite, and plenty of networking opportunities!
 
A complete list of speakers and topics can be found on the PHA on the Road website. Registration is FREE but required. Register online

Coming up in the next issue: Spotlight on June 13 New England PHA on the Road.
 
For more information on any of the four 2009 PHA on the Road Forums contact PHA at ontheroad@PHAssociation.org or 301-565-3004.

ADVOCATE RAISES AWARENESS OF PH RESEARCH AND EDUCATION ACT THROUGH THE MEDIA

2008 Annual Report
When the Tom Lantos Pulmonary Hypertension Research and Education Act was introduced in the House of Representatives last February, we asked members of the 435 Campaign and the PHAware Campaign to share the good news through their local media outlets.  On April 1, Merle Reeseman of Grove City, Penn., answered our call in a big way.
 
Appearing on KDKA's "Pittsburgh Live Today" TV show, Merle and two other guests shared important information about PH and called on the public to encourage their representatives to support the Tom Lantos PH Research and Education Act.
 
Merle's work as a Support Group leader and an active member of the 435 Campaign and the PHAware Campaign has already had a huge impact in our fight for a cure. Her recent television appearance ensures that thousands more people have heard about PH for the very first time and understand the importance of advocating for a cure.
 
Watch Merle Reeseman's interview on KDKA's "Pittsburgh Live Today"
NEW PAH BOOK TO JOIN PHA'S BOOKS AND GUIDES LIST

PHA's Books and Guides page will soon have a new addition: Pulmonary Arterial Hypertension, Diagnosis and Evidence-Based Treatment, edited by Robyn J. Barst, M.D., former professor of pediatrics in medicine at Columbia University College of Physicians and Surgeons and Cornell University in New York. She also served as the director of New York Presbyterian Pulmonary Hypertension Center.
 
Chapters are written by leading professionals in the PH field, including many who serve on PHA's Scientific Leadership Council.
 
Go to PHA's Books and Guides page to check out Pulmonary Arterial Hypertension, Diagnosis and Evidence-Based Treatment and other PH books and guides, including our popular PH Patient's Survival Guide.
PHA STAFFER CELEBRATES 10 YEARS OF SERVICE

Dorothy Bradley
April 15 marked 10 years of service for Dorothy Bradley, who is the second staff member to be hired by PHA. Dorothy, a part-time office assistant, helps with mailings and other tasks at least once a week.
 
"I've filled practically every job available that didn't involve the computer. I started out doing all jobs and then as more people were hired we shared the responsibilities," Dorothy said.
 
Dorothy's commitment to PHA extends beyond her work here: she has made plans in her will to contribute the proceeds of her house to PHA through PHA's Legacy of Hope Society. She said, "I didn't want the house, as far as I'm concerned, to go to anybody except PHA. And I figured that PHA is my family, come right down to it."
 
Dorothy was presented with a plaque for her service during a celebration Monday from fellow PHA-staffers.
 
PHA President Rino Aldrighetti, who hired Dorothy in 1999, said, "Over the past decade, Dorothy has given her all to PHA. She models an incredible work ethic for all of us. She has our respect, our appreciation and our friendship."
 
PHA thanks and congratulates Dorothy for her 10 years of service.
PH IN THE NEWS
Jamie's Thanks For Helping To Make His Dream Come True
(gazettelive.co.uk) -- Six years ago his only goal was to say alive. But now heart and double-lung transplant survivor Jamie Woodhouse is set to see his second dream come true as he prepares to jet off to Australia for the World Transplant Games. Read article
 
Silver Lake Man Fighting 'Death Sentence'
(timesuniononline.com) -- Dave Basham shouldn't be alive. Doctors told him he wouldn't live more than two years after being diagnosed with Primary Pulmonary Arterial Hypertension. That was five years ago. Now Basham and his wife, Lois, struggle to afford the medications that keep him alive. Read article
 
Biomarker Predicts Outcomes in Pulmonary Hypertension
(modernmedicine.com) -- High blood levels of a marker of inflammation and tissue damage, C-reactive protein (CRP), are associated with disease severity and survival in patients with pulmonary arterial hypertension (PAH), according to a report in the April 7 issue of the Journal of the American College of Cardiology. Read article

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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.