Thursday, May 31, 2012

Vote Yes by June 15 on Proposed Changes to Lung Allocation

The United Network of Organ Sharing (UNOS) uses an assessment called the Lung Allocation Score (LAS) to help determine the allocation of organs to patients in need, including PH patients awaiting lung transplant. Currently, the LAS significantly underestimates a PH patient's need for transplant, but that could change soon and you can help.

Recently, Raymond Benza, MD, of the West Penn Allegheny Health System, worked with UNOS on an initiative to “even the playing field” for PH patients seeking lung transplants. As a result of this work, the Thoracic Organ Transplant Committee proposed revisions to the LAS system that would greatly benefit PH patients and others waiting for transplants.

UNOS and the Thoracic Organ Transplant Committee want to hear from you about these changes! They’ve opened a public comment period on these revisions until June 15, 2012.

Public comments may come from private citizens, health professionals, patients, caregivers, friends and anyone else with a connection to this issue. When supporting the change by marking “yes,” you may also include comments about your connection to PH or transplant and why this policy change is important to you.

To make comments, visit: www.PHAssociation.org/LAS/SubmitComments

Live Education for Medical Professionals at PHA's 10th International Conference

The medical programming at PHA’s 10th International PH Conference and Scientific Sessions promises to provide an exceptional opportunity to bring the field’s top PH specialists together for education and networking.

Learn more on PHA's Conference blog

Promising New Research May Have Impact on Scleroderma Population

(Scleroderma Foundation) - A member of the Scleroderma Foundation's Board of Directors has led a team of researchers who have identified a peptide that can block fibrosis of the skin and lungs, according to a report published today. "Lung fibrosis currently is the number one cause of death in patients with scleroderma," said the report's senior author Carol A. Feghali-Bostwick, Ph.D. "Identifying a way to stop this process from happening could have enormous impact on mortality and quality of life." Read article

Wednesday, May 30, 2012

Research... A Story, A Call to Action

from PHA President Rino Aldrighetti's blog

This blog is about a shift that is dangerous – and unnecessary – for our country.  It offers a story and a call to action from the American Thoracic Society.

Read more about the need for funding for pulmonary and critical care research

Resources for Coping with PH

Pulmonary hypertension impacts more than a patient's physical well-being. PHA now offers resources that address the emotional aspects of life with PH for newly diagnosed patients, long-term survivors and parents. Coming soon -- resources for caregivers and teens.

Read resources on coping

Conference Information Goes Mobile

Have you heard about the newest way to get your up-to-date Conference information? PHA’s 10th International PH Conference and Scientific Sessions Mobile Application is currently available to download for all phone platforms and even for PCs and Macs!

Learn more about our Conference mobile app

Tuesday, May 29, 2012

Scleroderma Malignancy Risk Linked to Antinuclear Antibodies

(Internal Medicine News) - The presence of specific autoantibodies may help to predict which patients with systemic sclerosis are likely to develop cancer within a few years of their diagnosis, according to the findings of a U.K.-based registry study. Read article

Friday, May 25, 2012

We Look Good - The Story of Five PH Patients in China

The ISeek PH Cultural Center is a PH organization in China dedicated to raising awareness of PH and connecting with more patients living with the disease in China. ISeek has organized many PH activities around the blue lips campaign and Rare Disease Day in an effort to educate the public about this disease.

Recently, in honor of World PH Day (May 5, 2012), ISeek has put together a video that shows five women talking about life with PH. Huanghuan, a PH patient and founder of ISeek, said “On May 5, 2012 (World Pulmonary Hypertension Day) we published a video on the Internet titled, ‘We Look Good - PH patients from China’ to raise public awareness about PH and the invisible disability that has long been neglected in China.”

Help spread the word about PH and make this video viral!


Update from PHA Europe

PHA Europe has been busy. Read their latest update about the First World Pulmonary Hypertension Day launched from Spain, a stakeholders meeting in Brussels and launch of a policy brief for the European Parliament.

Read PHA Europe update (PDF)

The Trajectory to Diagnosis With Pulmonary Arterial Hypertension: A Qualitative Study

(BMJ Open) - Funded by Pulmonary Hypertension Association UK, objectives of this study were to investigate the patient's experience of the trajectory to receiving a diagnosis of pulmonary arterial hypertension (PAH) and inform the provision of care for this patient group. Participants were interviewed in their own homes across England.

Conclusions: Limited awareness of PAH outside specialist centres leads to misdiagnosis, delays in treatment and an increasing sense of anger, frustration and confusion for many patients. Repeated tests and visits to numerous medical professionals, including GPs and cardiac or respiratory consultants over a number of years, represents a significant use of resources and consequent cost to the NHS. Read Article

Thursday, May 24, 2012

Colleen Brunetti Chasing Dreams

Colleen Brunetti, a member of PHA's Generation Hope, had a busy long weekend last week. On Thursday she traveled to Washington, D.C. to lobby on Capitol Hill for the Tom Lantos PH Research and Education Act, visit with PHA staff and visit United Therapeutics. Then she headed North to New York City for a Generation Hope Meet & Greet. You can read all about her weekend on her blog!

Part One: Washington, D.C.
Part Two: New York City

Read more on Colleen's blog

Watch Blue Lips Video about Erika Prieto's Journey

Check out this short video about Erika Prieto's journey with pulmonary arterial hypertension (PAH).


Wednesday, May 23, 2012

Cuyahoga County Common Pleas Court Judge Nancy McDonnell Grateful for Organ Transplant

(NewsNet 5) - According to Lifebanc, the federally designated, nonprofit organ procurement organization for northeastern Ohio, nearly 115,000 people in the United States are waiting for organ transplants. Cuyahoga County Common Pleas Court Judge Nancy McDonnell has been there. Read article and watch news video

Tuesday, May 22, 2012

PHA Recognizes Outstanding Members of the PH Community

Matacha Saul receiving the Julie Hendry Memorial Scholarship Award in 2010
Year after year, PHA is grateful for how much our community members do to support the fight against PH. Our 2012 winners are a group of dedicated and passionate patients, caregivers and medical professionals who are inspiring and exemplary members of our community!

Award recipients are nominated and selected by community members just like you. In no particular order, the 2012 winners are…

Julie Hendry Memorial Scholarship Award
Jaclyn Burdick

Outstanding Allied Health Professional
Mary Bartlett, RN

Outstanding PH Citizen
Jeanette Morrill

Outstanding Support Group Leader
Nicole Cooper

Outstanding Young PH Citizen
Sean Wyman

International Physician of the Year
Julio Sandoval Zárate, MD

Physician of the Year
Raymond L. Benza, MD, FACC, FAHA

We will honor these award winners at PHA’s 10th International PH Conference and Scientific Sessions in Orlando, Fla., June 22-24, 2012.

Read more about the 2012 award recipients and everything they’ve done to support PHA and the fight against PH.

For Medical Professionals: Upcoming Medical Education Events in Colorado and Connecticut

Building Medical Education in PH Event in Colorado
June 6 - 9, Aspen, Colo.
The Thomas L. Petty Aspen Lung Conference “Mechanics and Mechanisms of Pulmonary Hypertension,” hosted by the University of Colorado, Denver, will emphasize the integration of basic, translational and clinical sciences and will focus on the utilization of new strategies and technologies to investigate the pathogenesis, treatments and outcomes of PH. Learn more about this event

Building Medical Education in PH Event in Connecticut
Thursday, June 7, Norwalk, Conn.

The 6th Annual Pulmonary Hypertension Symposium, hosted by the Section of Pulmonary and Critical Care of the Department of Internal Medicine at Yale University, will expose the care provider to potential future therapies that are being actively explored as well as review the important elements in distinguishing PAH from other forms of PH. Learn more about this event

Learn more about PHA's BME program

Friday, May 18, 2012

Miracles for Molly Dunne

The Dunne’s family friend, Erin Lacey, started a campaign to gather photos taken around the world for Molly, a 7-year old pulmonary hypertension patient. Each photo shows someone holding Molly’s photo in a different place, as a symbolic way for her to travel the world and complete her Bucket List. These photos raised Molly's spirits and raised awareness about pulmonary hypertension. Molly very much enjoyed looking at all these photos with her family, and many new people around the world learned about PH through Molly’s story. Many of you in the PH community have joined in this effort on Facebook. Miley Cyrus even got in on the action.

It is with sadness that we report Molly passed away yesterday morning. Our thoughts are with the Dunne family.

The Dunne family has requested that the Miracles for Molly Dunne campaign continue on as a way to raise awareness of pulmonary hypertension. We encourage more of you to join in by taking a photo of yourself wherever you are, with a photo of Molly (you can get one on the Facebook page) and post it to the Miracles for Molly Facebook page.

Here's PHA's photo taken Wednesday:


Jammin' for a Cause

Congrats to the Sarasota PH community for partnering with Keller Williams Realty’s “Team Guardian Angels” to put on a successful fundraising brunch on Sunday, May 6, raising thousands for PHA.

Support group member Carmen Elizabeth Anzellini helped to coordinate Jammin' for a Cause, and Support Group Leader Gail Bucci represented PHA at the event, which benefited PH research and services and the local Tidwell Hospice. This is one of two recent Florida-based special events that, as Gail puts it, served as “a kickoff to PHA’s 2012 Conference.”

To learn more about PHA’s Special Events or to plan your own, visit PHA’s Special Events web page.

No Support Group in Town? Pick Up the Phone!

Want to chat with another patient? Can't make it out to a local support group meeting? A support group is only a phone call away. Our patient telephone support group makes it easier to participate regardless of your work hours, distance or health concerns.

PHA’s Monthly Patient Telephone Support Group
When: Thursday, May 24, 8 p.m. ET/5 p.m. PT
Where: On the phone and online. The web portion is optional. You must dial in to participate. Details will be provided after you register.

Register now

For assistance: Debbie, 301-565-3004 x755

Thursday, May 17, 2012

PH Community More Than Halfway to Reaching PHA’s Conference Advocacy Challenge Goal

Anthony Ratekin from Rep. Nunes’ office visits
Perry Mamigonian’s Fresno Support Group Meeting

Since January, PH community members have contacted their Members of Congress 562 times requesting co-sponsorship of the Tom Lantos Pulmonary Hypertension Research and Education Act. Each message will be counted in PHA’s Conference Advocacy Challenge: From a Kitchen Table to Congress!

Success! Rep. Nunes and Rep. Neal Agree to Co-sponsor!
Thanks to the hard work of PH community members who’ve contacted their Members of Congress throughout this year, the bill now has two more co-sponsors! Last week, Representative Devin Nunes (R-CA) and Representative Richard Neal (D-MA) agreed to cosponsor the PH Research and Education Act. 

Help us reach our goal of sending 1,000+ messages to Congress!

The Social Security Scoop: Online Application Improvements

Adults filing for Social Security (SS) benefits online can now complete their applications online, rather than printing and mailing the final paper authorization form (Form SSA-827) to SS offices. This new feature streamlines the online application, which is already shorter than the paper application.

Learn more

Tips for Traveling with Pulmonary Hypertension

Planning to attend PHA’s 10th International PH Conference or a summer getaway? PH does not have to hinder your travel plans! This recording from our last Conference shares tips for traveling, including information on traveling with oxygen. Planning ahead can take the stress and what-ifs out of traveling with PH. Listen to recording

Wednesday, May 16, 2012

NORD Honors PHA For Leadership in the PH Community

PHA President Rino Aldrighetti with the 2012 Abbey S. Meyers Leadership Award
The National Organization for Rare Disorders (NORD) awarded the Pulmonary Hypertension Association (PHA) the Abbey S. Meyers Leadership Award for outstanding leadership and representation of our members in education and advocacy. Roughly 500 members of the rare disease community came together on May 15 to recognize outstanding Members of Congress, the NIH, companies and organizations that strive to improve the lives of people with rare diseases.

Read more on why PHA received this award | Read more about the NORD event

Original Song in Honor of Katie Grace

Kathy Groebner shared this YouTube video on Facebook recently. It's a moving song set to a slideshow that was written, played and sung by their friend Melayna C. Pratt in honor of Kathy's daughter Katie Grace, who has pulmonary hypertension. Watch the video below.


For Medical Professionals: Two New Courses in PHA Online University

PHA Online University Course: PH-Specific Oral Therapy
Presented by Ingram Schulze-Neick, MD, PhD, at the 4th International Neonatal and Childhood Pulmonary Vascular Disease Conference, this course discusses the current oral therapies available for the treatment of pulmonary hypertension with specific attention paid to the evidence for use in pediatric patients where available.
Learn more and take course

PHA Online University
Course: PH-Specific Inhaled Therapy
Presented by Erika Berman-Rosenzweig, MD, at the 4th International Neonatal and Childhood Pulmonary Vascular Disease Conference, this course discusses the current inhaled therapies available for the treatment of pulmonary hypertension. Special attention is paid to the possibility for inhaled therapies to be used in critical care settings especially with pediatric and neonatal populations.
Learn more and take course

Thursday, May 10, 2012

Relationships and Invisible Illnesses

(WebMD Blogs) A Different Normal - Living with a Chronic Condition: A few months ago, I wrote a post about the process of getting diagnosed with an "Invisible Illness" and how it can be difficult to get doctors on board. This month, I decided to look at how our illnesses can affect our relationships with those around us. Read the blog

Delicate Heart Surgery Stops Blood Clots, Saves Jean Magazzu's Life

(Post Gazette) - About a year ago, Jean Magazzu was diagnosed with bronchitis, but after two courses of different antibiotics, her symptoms remained. By June, she had extreme shortness of breath. "I couldn't get up and walk across the room without having to rest," said Ms. Magazzu, 44. She went to St. Clair Hospital's emergency room, where a scan showed she had blood clots in her lungs. Read article

New Lease of Life for Battling Mum

(Chorley Guardian - UK) - A battling mum who underwent a double-lung transplant has beaten the odds to make a remarkable recovery - just a month after leaving hospital. Natalie Kerr, from Adlington near Chorley, faced not seeing her children grow up after being diagnosed with pulmonary hypertension four years ago. Read article

Culprit Responsible for Severe Systemic Scleroderma Complications in African-Americans Found

(EurekAlert) - A new analysis finds that compared to Caucasians, African-Americans with systemic scleroderma have more antibodies in the blood that are linked to severe complications and an increased likelihood of death. They say this finding, published today in Arthritis & Rheumatism, suggests physicians can use these disease markers to screen and treat scleroderma patients proactively. Read article

Wednesday, May 9, 2012

Why is PH a Zebra?

Doctors are taught: “When you hear hoof beats, think horses, not zebras.” Pulmonary hypertension is a medical zebra. PHA has big plans to raise PH awareness with front line medical professionals and the general public to make PH the zebra that every doctor knows about.

Learn more about this new way PHA is fighting PH, and how you can support all the ways PHA is fighting for a cure.

Tuesday, May 8, 2012

Make Small Changes to Improve Your Self-Image

On low-energy days, try telling family and friends “My body needs rest” rather than “I’m feeling lazy.” Replacing negative self-talk with judgment-free language that acknowledges your honest needs can improve your outlook and your quality of life.

Read more about maintaining a positive self-image

Best Friends Coming to Conference Together & Modeling in Fashion Show

18-year-old Shannon O’Donnell is getting ready to attend her 3rd International PH Conference this June in Orlando. But this time around, her best friend of 8 years, Jen, will be by her side to experience the magic of the event! Shannon & Jen created a short video blog in which they talk about their friendship, and their plans to participate in the Saturday evening PH Fashion Show…they each show off an outfit they plan to model, too! 

Watch video blog

Monday, May 7, 2012

Congressional Staffers "Inundated" with Phone Calls for a Cure

On April 26, 2012, PHers across the country spent the day calling their Members of Congress to urge them to co-sponsor the Tom Lantos PH Research and Education Act of 2011. Several PHers reported back to PHA that the staffers had received a flood of calls urging them to support more PH research and education.

Read more in PHANews

A Mother Shares Her Experiences as a Veteran of Four Conferences

by Christina Doak, PH Parent...

PHA's 10th International PH Conference and Scientific Sessions in Orlando will be here before we know it. I’m sure parents are mulling over the decision to attend, but for me it is an easy decision. I will be taking my family to Orlando for my fifth Conference and their fourth. There is no other venue at which a family dealing with pulmonary hypertension can receive the same kind of support, emotional connection and education.

Read more on our Conference blog, Table Talk: Wired

PH Patient Awaiting Lung Transplant Finds New Hobby

(Dayton Daily News) - Dr. Marie Budev has seen hundreds of patients in her work as medical director of the Cleveland Clinic’s lung transplant program, but she has never seen anyone quite like Bryan Denniston of Tipp City. Nobody else on the lung transplant list is in the habit of strapping 22 bottles of oxygen on three motorcycles and taking off for parts unknown on his 1992 Honda Goldwing 1500. Read article

Friday, May 4, 2012

Participate in World Pulmonary Hypertension Day on Saturday, May 5

The Asociación Nacional de Hipertensión Pulmonar of Spain (ANHP) has created World Pulmonary Hypertension Day to raise awareness of pulmonary hypertension on a global scale. This event will consist of a Scientific Symposium on May 4, 2012, for PH physicians followed by the main World PH Day events, a cocktail gala and the ANHP General Assembly on May 5. Visit their event page for more information

Please show your support and solidarity for this event by participating in online awareness activities. PHA is asking our community members to change their Facebook statuses on May 5 to signify our unity in recognizing this important day. Keep an eye on PHA’s Facebook page for further instructions!

VentriPoint Launches Clinical Trial in Pulmonary Arterial Hypertension (PAH) With Top PH Centres in the United States and Canada

(SYS-CON Media) - VentriPoint Diagnostics today announced the commencement of the pivotal clinical trial to demonstrate that the VentriPoint heart analysis system is equivalent to cardiac MRI in patients with pulmonary arterial hypertension (PAH). The trial will be lead by Dr. Robyn Barst. Read article

Thursday, May 3, 2012

Pediatric Webinar Series: Emergency Preparedness

Thursday, May 17, 8:30 p.m. ET/5:30 p.m. PT

When your child has PH, even simple medical procedures can become complicated. Brian Hanna, MDCM, PhD, and Steve Walker, MS, CRNP, will discuss anesthesia and surgery and the things to ask before PH kids undergo medical procedures. They will also offer recommendations on being prepared for an emergency situation.

Register now

Caregivers Webinar: Creative Expression as a Coping Tool

Wednesday, May 16, 8:30 p.m. ET/5:30 p.m. PT

Medical research shows that participating in a creative outlet - including writing, painting, photography and craft-making - can lead to improved physical, mental and emotional health. Join this webinar to discuss the benefits that creative endeavors can bring to your physical and mental well-being as caregivers.

Register now

Wednesday, May 2, 2012

Comment on Proposed Lung Allocation Changes

The United Network of Organ Sharing (UNOS) uses something called the Lung Allocation Score (LAS) to help determine the allocation of organs to patients in need, including pulmonary hypertension patients awaiting lung transplant. Currently, the LAS significantly underestimates a PH patient's need for organs, but that could change soon and you can help.

Learn more and submit a comment in support of the LAS proposed revisions

¿Has Visto El Nuevo CuidadoDeSalud.Gov?

Este sitio de web provee información para entender la ley de cuidados de salud, recursos para explorar tus opciones de cobertura, un glosario, consejos para mantener la salud y más.

Visita el sitio

Tuesday, May 1, 2012

A 9/11 Rescue Worker Living with Pulmonary Hypertension

The Caring Voice Coalition just recently made their magazine available for free on their website. In the most recent issue they feature a 9/11 rescue worker who developed pulmonary hypertension due to the exposure to harmful dust and toxins he breathed in during the post-9/11 cleanup.
from the CVC story
Every night, he'd go home and wash the dust out of his eyes and ears, and blow the dirt and grime from his nose. He'd sleep whatever few hours he could, wake up, and do it all over.
Read the rest of the story and others from the Caring Voice Coalition magazine