Monday, April 30, 2012

Last Call for Notes of Thanks and Remembrance!

Last call! Print your special note of appreciation in the program book for PHA’s 10th International PH Conference! You don’t have to go to Conference to be able to tell the 1,300 expected attendees who is important to you. Each note is only $25 and all proceeds go toward the Conference Scholarship Fund! Hurry – all notes are due tomorrow, May 1 by midnight!

Submit your note of appreciation

New Resources about Chronic Thromboembolic Pulmonary Hypertension (CTEPH)

Chronic thromboembolic pulmonary hypertension (CTEPH) is a form of pulmonary hypertension caused by old blood clots in the lungs (pulmonary embolism). The Pulmonary Hypertension Association recently developed resources to help you identify symptoms, diagnosis and treatment options. We hope these resources answer some of your common questions about CTEPH.

Read about chronic thromboembolic pulmonary hypertension

Actelion's Macitentan Meets Primary Endpoint in Pivotal Phase III Seraphin Outcome Study in patients with pulmonary arterial hypertension

(Reuters) - Actelion announced today that initial analysis indicates that the pivotal, long-term, event-driven study SERAPHIN with macitentan, a novel dual endothelin receptor antagonist, in 742 patients suffering from pulmonary arterial hypertension (PAH) and treated for up to three and a half years, has met its primary endpoint. Read article

Friday, April 27, 2012

Webinar for Medical Professionals: 17-Beta Estradiol Attenuates Hypoxic PH via Estrogen Receptor-Mediated Effects

PHA Online University Webinar
Thursday, May 10, 2:00 p.m. ET/11:00 a.m. PT

In this webinar, Tim Lahm, MD, from Roudenbush VA Medical Center in Indianapolis, Ind., will discuss his recent research involving 17-Beta Estradiol and the role it plays in tempering hypoxic pulmonary hypertension.

Register now

Creativity and Healing through Blogging

Medical research links creativity with reduced symptoms and improved health. In this second in the creativity webinar series, active bloggers Leigh McGowan and Colleen Schnell discuss their experiences with blogging as a form of creative self-expression. Learn blogging tips and tricks and find out more about the online pulmonary hypertension blogging community.

Watch webinar recording in PHA Classroom

Slices of Life: Sister's Online Initiative Helps Brother's Cause

(Reading Eagle) - Just a few months before graduating from Wyomissing High School with the Class of 2010, Jake was diagnosed with pulmonary hypertension. Wanting to help, his sister Brooke decided to created a personalized website through FirstGiving. She explained people need only to visit the website to make a donation online and post messages to Jake. The money then goes directly to the Pulmonary Hypertension Association for research. Read article

Thursday, April 26, 2012

National Call-In Day Today! Call Your Members of Congress!

Ask your Members of Congress to Support the PH Research and Education Act

Today's National Call-In Day is our chance to flood Congressional halls with our calls for PH research and education. Fifteen minutes of your time and three phone calls will make a difference to the entire PH community. 

Learn more and make your calls!

Spread the Word!

You don't have to have pulmonary hypertension to contact your Members of Congress. Anyone can call and ask for support for the PH Research and Education Act! Here's how you can make PHA's National Call-In Day go viral by inviting all of your family and friends to call their Members of Congress.
  1. Get plugged in! RSVP to PHA's National Call-In Day Facebook event. Then invite your Facebook friends to join.
  2. Create a buzz! After you've made your calls, post about it on your social networking pages.
For more information about PHA's National Call-In Day, contact Advocacy@PHAssociation.org.

Wednesday, April 25, 2012

PHA Raises Awareness About Pulmonary Hypertension at AIDS Summit

Chanda Causer, PHA's Manager, Patient Outreach and Services, attended the National Association of People with AIDS (NAPWA) Summit, April 10 – 14 in Dallas, Texas. While at the conference, she exhibited many of PHA’s resources, including our “HIV and PH” brochure. She met nearly 200 HIV patients, many of whom live with the virus and other illnesses, like COPD, congenital heart disease, methamphetamine use and a few with PH. At the conclusion of the Summit, NAPWA agreed to share and promote our forthcoming PH and HIV video.

Learn more about pulmonary hypertension and HIV

Planning for College: Know your Rights (and Responsibilities)

from Colleen Brunetti on the Generation Hope Blog...

Having pulmonary hypertension can throw a few kinks in your plans, but it doesn’t mean things like college are now impossible. What it does mean is that you may have to do a little extra footwork to prepare for a major transition like college, or to adjust your current college experience to a new diagnosis. Read more

Tuesday, April 24, 2012

Great Interest in Pulmonary Hypertension at Recent Conference for Cardiologists

Recently PHA attended the American College of Cardiology Conference where there was great interest in pulmonary hypertension. PH experts spoke about different aspects of the disease ranging from clinical research to issues affecting special populations within the PH community. Additionally, over 60 abstracts on pulmonary hypertension were submitted to the meeting with over 20 presented as posters at the event.

Patient Telephone Support Group Thursday!

Need to talk to another patient? Can’t wait until the next support group meeting? No group meeting in your area? Join us on the next Patient Telephone Support Group meeting:

Thursday, April 26, 2012 at 8:00 p.m. ET/5:00 p.m. PT

The call is a great opportunity to connect with other people across the country who can relate to your experiences and share tips and strategies.

Register now

You can check the schedule anytime at www.PHAssociation.org/PatientTelephoneGroup.

I hope you can join us!

An Uncommon Bond - Sisters Fight Rare Disease

(Valley News Live) - They finish each other's sentences, laugh at the same things -- meet two sisters who do everything together. But they never realized they would be diagnosed with the same rare condition just days apart. It was the same disease their mother died from 20 years ago. Carmen and Lana were diagnosed with pulmonary arterial hypertension. Read article and watch the news video

Monday, April 23, 2012

PHA Action Alert: Call Your Members of Congress on Apr. 26

Pledge to Make YOUR Phone Calls for a Cure on April 26!

Ask your Members of Congress to Support the PH Research and Education Act

PHA's National Call-In Day is our chance to flood Congressional halls with our calls for PH research and education. Fifteen minutes of your time and three phone calls will make a difference to the entire PH community. Pledge to contact your Members of Congress on Thursday, April 26.

Worried you won’t know what to say? PHA has got you covered! When you fill out the above pledge form, you're signing up to receive a reminder email before the National Call-In Day with talking points, information on the Tom Lantos PH Research and Education Act, and even a sample script.

MAKE THE PLEDGE!

Spread the Word!

You don't have to have pulmonary hypertension to contact your Members of Congress on National Call-In Day. Anyone can call and ask for support for the PH Research and Education Act! Here's how you can make PHA's National Call-In Day go viral by inviting all of your family and friends to call their Members of Congress.
  1. Get plugged in! RSVP to PHA's National Call-In Day Facebook event. Then invite your Facebook friends to join.
  2. Create a buzz! After you've made your calls on April 26, post about it on your social networking pages.
For more information about PHA's National Call-In Day, contact Advocacy@PHAssociation.org.

First World Pulmonary Hypertension Day May 5

From our president, Rino Aldrighetti's blog...

In 2010, Juan Fuertes and Irene Delgado of the Asociación Nacional de Hipertensión Pulmonar (ANHP) began a quest.

They believed that it was time for the world to recognize pulmonary hypertension – and they believed that a World PH Day was the way to do it. Like any new idea, at first there was skepticism but they continued to push forward…and soon people began to understand the possibilities.

They picked a day that has great significance to the Spanish PH community and will soon become a marker for our community worldwide. May 5 is the date of the first recorded pediatric PH death in Spain. That was 30 years ago. Now that date will become a marker for greater global cooperation in the fight against this disease.

Read more about World PH Day and how you can get involved

Friday, April 20, 2012

New Data Shows GeNO LLC Nitric Oxide Delivery System Provided Nitric Oxide With Low Levels of Nitrogen Dioxide for Heart Transplant Patient Evaluation

(Yahoo Finance) - New data presented today studied the safety of the GeNO  system for delivering inhaled nitric oxide (NO) to patients being evaluated for cardiac transplant. The study evaluated 10 heart failure patients who underwent RHC prior to cardiac transplant or LVAD implant. Read article

Pulmonary Hypertension Predicts Heart Failure After Acute Myocardial Infarction

(DoctorsLounge) - Pulmonary hypertension (PH) is a strong independent predictor of heart failure in patients with acute myocardial infarction (AMI), according to a study published in the May 1 issue of The American Journal of Cardiology. Read article

Thursday, April 19, 2012

Scientists Lead Trek to Investigate High-Altitude Maladies

(Castanet) - Canada’s international scientific expedition to Mount Everest is preparing to depart for Nepal on Sunday April 22. Everest 2012, a six-week, six-country research investigation into the effects of heart and brain blood flow and oxygen deprivation at high altitudes, will settle into the Pyramid Laboratory near Everest base camp for a six-week stay through the end of May. Expedition members will themselves be the test subjects for the experiments. Some experiments, like one measuring pulmonary arterial hypertension, involves invasive minor surgery to place arteriovenous shunts in wrist and neck arteries to measure acute hypoxia (oxygen deprivation) following ascent to high altitude. Read article | Follow the Everest expedition

Soprano Sings About Importance of Organ Donation

(CBS News) - About 113,000 Americans are waiting for new organs, but many will not live long enough to get them. To raise awareness of the need for organ donors, one young patient is raising her voice, sharing her remarkable story of survival. Charity Tillemann-Dick was once told singing the music she loved could kill her. To an opera singer, there's little that's more precious than a good set of lungs. Her wait for a transplant was excruciating. Read article and watch news video

Wednesday, April 18, 2012

UPDATE: News Story on PH Patient's Transplant from CBS-TV

View the “CBS This Morning” story of opera singer Charity Tillemann-Dick, a pulmonary hypertension patient who recently went through a second double lung transplant. Then share this link widely to promote PH awareness and organ donation.

Watch CBS news coverage

Tuesday, April 17, 2012

ALERT: PH Patient on CBS Morning News Tomorrow Morning

Charity singing at PHA's 2006
Rockin' for the Cure
“CBS Morning News” will air a story about opera singer and PH patient Charity Tillemann-Dick (Charity Sunshine) tomorrow, Wednesday, April 18 at 8:10 a.m. ET. The story will cover Charity’s recent second lung transplant. PHA was contacted in the preparation of this story and has provided materials and information about our organization and about the current proposed changes in policy about allocating lungs for transplant into PH patients. Please tune in to the program if possible, share this announcement with others close to PH, and look for the coverage online afterward if you miss the original airing.

PH Treatments Update Available Online

The recording for PHA's annual update on pulmonary hypertension treatments has been posted online in the PHA Classroom. Learn from Dr. Michael McGoon of the Mayo Clinic in Rochester, Minn., about the treatments that are currently available and treatments in the pipeline.

Watch PH Treatments: What's On the Horizon

Monday, April 16, 2012

The Amazing Adventures of Steve and Lucas

Lucas Van Wormer
Steve Van Wormer has created a number of public service announcements (PSAs) about different pulmonary hypertension topics. His ten-year-old son Lucas, who has PH, did the voice overs. In conjunction with UCLA Health System they publicized their efforts and they have garnered a lot of attention.

Read our president Rino Aldrighetti's blog for an update on the coverage Steve and Lucas Van Wormer are getting.

New Patient/Family Led Sessions to Look Forward to at Conference

Doug Taylor
From Doug Taylor, Co-Chair 2012 Conference Patient/Family Led Sessions

One of the many highlights of each Conference are the Patient/Family Led Sessions. They provide an opportunity for pulmonary hypertension patients and caregivers to learn from one another on a peer-to-peer basis … As the Co-Chairs of the Patient/Family Led Sessions, Jeannette Morrill and I (Doug Taylor) have placed a lot of thought into the topics that will appeal to our community and identified panelists who offer a variety of experience and knowledge.

Learn more from Doug about the new Patient/Family Led Sessions being offered and how to decide which ones you want to attend

Friday, April 13, 2012

New Data on GeNO LLC Nitric Oxide Delivery System to be Presented at ISHLT Conference Next Week

(Biotechnology News Today) - GeNO LLC today announced that data on the NITROSYL Delivery System during Right Heart Catheterization (RHC) in subjects being evaluated for Orthotopic Heart Transplantation (OHT) and Left Ventricular Assist Device (LVAD) implantation has been selected for oral presentation at the International Society for Heart & Lung Transplantation (ISHLT) Annual Meeting in Prague, Czech Republic on April 19, 2012.

The primary aim of the study is to evaluate the safety, tolerability and device performance of the GeNO NITROSYL Delivery System during RHC. Secondary considerations are to confirm that inhaled NO generated by the system reduces pulmonary vascular resistance (PVR) in patients with reversible pulmonary hypertension and contains levels of Nitrogen Dioxide (NO2) well below the upper level of acceptable exposure. Read article

Thursday, April 12, 2012

Introducing the PHA Daily Beat: News for your Health and Heart

As you can see, the What’s New in PH feed has gotten a makeover! Our goal is to better reflect the vibrancy of the PH community through news, stories, events, educational information and opportunities for involvement that are included in our daily updates. You’ll also notice to the top right that you can now subscribe to receive content as it is posted via email in addition to RSS.

If you subscribe to the RSS feed, come visit our PHA Daily Beat page to see the new look at www.PHAssociation.org/PHADailyBeat.

Need to catch up on what’s been going on in the PH community? You can still read older posts on the old What’s New in PH feed.

Views Older Posts

To view older posts, go to the old What’s New in PH feed.