Friday, June 29, 2012

Actelion Pharmaceuticals Announces U.S. FDA Approval of Supplemental New Drug Application for Second Generation VELETRI(R) (epoprostenol) for Injection

(Market Watch) - Actelion Pharmaceuticals US, Inc. announced today that the U.S. Food and Drug Administration (FDA) approved their supplemental new drug application (sNDA) for second generation VELETRI, for the treatment of pulmonary arterial hypertension (PAH) (WHO Group 1) to improve exercise capacity. Read article

Wednesday, June 27, 2012

Last Chance to Vote for Shari

Shari Caffrey is a highly involved special event organizer who has raised well over $60,000 for pulmonary hypertension research and awareness in her community. For the work that she does for the community, Shari has been nominated for an award that she needs your votes to win.

Vote for Shari | Learn more about Shari's work

PHA on the Road is Heading Out Across the Country Again this Fall!

PHA on the Road: PH Patients and Families Education Forums are FREE day-long patient and caregiver educational programs that give attendees the opportunity to learn about PH diagnosis and treatments and meet fellow PH patients and families in their local regions. Each city brings together a committee of medical professionals from the region to conduct the educational sessions.

The 2012 PHA on the Road forums will take place in New Brunswick, N.J. at the Hyatt Regency New Brunswick on September 8, and the Chicago, Ill. Area at the Stonegate Conference & Banquet Centre on October 13. More information about the forums, including a schedule of events, location and speakers is available at www.PHAssociation.org/OnTheRoad.

Participation in PHA on the Road is free but registration is required and early registration is strongly suggested. Register now at www.PHAssociation.org/OnTheRoad/Registration or by calling 301-565-3004 x768.

Tuesday, June 26, 2012

Sometimes it’s PH: An Early Diagnosis Campaign

We as a PH community have made a lot of progress together, including the development of nine treatments and specialty care centers across the U.S. Yet the time it takes for a patient to be diagnosed with PH has remained unchanged over the past 20 years. Almost three-fourths of patients have advanced PH by the time they are diagnosed. Join PHA in our bold new initiative to reduce the time from symptom onset to accurate diagnosis of PH by right heart catheterization.

Visit SometimesItsPH.org | Watch and share the campaign video

Read Conference Stories

Conference was a blast! Read all about it on our blog or share your own story. Visit the Conference blog

AGH Pulmonary Hypertension Researchers Tap Unique Gathering of Patients in Orlando to Advance Understanding, Treatment of Deadly Lung Disease

HealthCanal - For physicians and medical researchers who specialize in rare diseases, a significant challenge to conducting effective basic and clinical research that may offer the hope of improved treatment, if not a cure, is often finding enough patients to participate in studies. This week in Orlando, Florida, a group of the nation’s leading specialists in one such disease, a deadly lung condition called pulmonary hypertension (PH), enjoyed the unique experience of having hundreds of willing patients come to them over the course of just a few days. Read article

Saturday, June 23, 2012

PHA Office Closed Monday

PHA's office will be closed Monday, June 25. Staff will be taking a much needed day of rest after the Conference weekend and will return fresh on Tuesday, June 26.

Wednesday, June 20, 2012

PHA Daily Beat on Hiatus - Visit Conference Blog

PHA Daily Beat will be on hiatus the next few days during PHA's 10th International PH Conference and Scientific Sessions in Orlando, Florida. You can follow what's going on at Conference all weekend on Table Talk: Wired, our Conference blog.

Read Conference blog

Caregivers: Creativity as a Coping Tool Recording Available

Medical research shows that participating in a creative outlet - whether it be writing, painting, photography, etc. - can lead to improved physical, mental and emotional health. View this webinar to learn more about the benefits that creative endeavors can bring to your physical and mental well-being as caregivers. The webinar was led by PH caregiver Nancy Leaman and PH parent Christina Doak.

Watch Coping as a Coping Tool webinar

Special Events from Coast to Coast

PHA extends a warm thank you to our volunteer event organizers who gathered crowds on the west coast and east coast to walk, run, wash, play bocce and more for a cure this past month! From California to New York, volunteer event organizers raised PH awareness in all kinds of ways!

Thank you to the following events:
  • PHA Car Wash in Memory of Alexandria Beeson – Chino, Calif.
  • Raise Your Fork for a Cure – Chino, Calif.
  • For You: A PHA Benefit Concert – Mexico, N.Y.
  • 3rd Annual Race 2 Cure PH: Taylor Caffrey Memorial 5K – Anaheim Hills, Calif.
  • 3rd Annual Bocce for Better Breathing Tournament – Medford, Mass.
  • 2nd Annual Power for PH: New Jersey’s PHun Walk – Edison, N.J.
Are you interested in hosting a special event fundraiser in your community? Get connected with resources by contacting Jessica McKearin, PHA’s Associate Director of Special Events, at 301-565-3004 x765 or Events@PHAssociation.org.

Tuesday, June 19, 2012

Not Attending PHA’s Conference? Here’s How You Can Participate

PHA’s 10th International PH Conference and Scientific Sessions will be the largest gathering of PH patients, families and medical professionals ever assembled. At almost 1500 registrants, our Conference is sold out!

For those of you who aren’t able to join us in Orlando this week, we have the following ways you can participate from home:
In the upcoming months you will also be able to listen to and watch session recordings on PHA Classroom.

Coming to Conference? Share Your Experiences With PHers Who Cannot Attend

We want to share the Conference experience with those who cannot attend PHA's 10th International PH Conference and Scientific Sessions this week in Orlando. If you're attending, please take a moment during Conference to share a story, photo, video or anecdote of your experiences with PHers at home.

Conference Blog: submit at the BlogosPHere in the Exhibit Hall or from your own computer at www.PHAssociation.org/SubmitConferenceBlog

Twitter: Use #PHAConference

Facebook: Share on PHA's Facebook page at www.facebook.com/PulmonaryHypertensionAssociation

Burbank 10-year-old Speaks Up About ‘Adult’ Lung Disease That Affects Kids

(L.A. Parent) - When 4-year-old Lucas Van Wormer didn’t have the energy to play like other kids his age, there were lots of doctor visits, but few answers. He had been on a “downward trajectory” for the better part of a year. “We just noticed that he was sluggish and not feeling well,” says Lucas’ father, Steve Van Wormer. “He was basically being misdiagnosed with asthma.”

To help raise awareness about PH in kids, Lucas, who’s now 10, is using his lungs – more specifically, his voice. He teamed up with his dad, who does professional voice-over work, to create a 30-second Public Service Announcement to help educate the public about how the disease affects kids. Read article

Monday, June 18, 2012

New Transplant Section

We have completely revamped our lung transplantation section. Check out resources for pulmonary hypertension patients, transplant recipients, and friends and family members.

Visit Transplant section | Watch webinar on coping with emotional impact of transplant process

Daughter Collects Pennies for Mom

(YorkRegion) - Find a penny, pick it up. All day you’ll have good luck. McKynlea Waters-Goodman, 10, hopes some of that good luck will rub off on her mother, Cindy Winters. Ms Winters suffers from pulmonary hypertension. Read article

Friday, June 15, 2012

Carl Hicks, An Advocacy Hero

From PHA President Rino Aldrighetti's blog

On Wednesday, June 6, Carl Hicks sat at a long table in front of the Senate Defense Appropriations Subcommittee and told his story and made his request. A former Army Ranger, Lt. Col. Hicks (Ret.) spoke about his daughter, Meaghan, and her battle with pulmonary hypertension. He has done this many times before, several years ago visiting the offices of over 100 Members of Congress in a two day advocacy marathon.

Read more

Medical Professionals: New Considerations in Nursing Course on PHA Online University

This course features three sessions that focus on the following issues: “Transitions in Therapy: Integrating Best Practices,” “Asking the Right Questions: The Lost Art of Patient Interviewing” and “A PAH Treatment Algorithm: The Power of a Solid Plan.” This course is offered for a maximum of 3.0 hours of nursing CEUs.

Learn more and take the course

Thursday, June 14, 2012

Key Information for Conference Attendees

PHA's 10th International PH Conference and Scientific Sessions is next week! It will be the largest gathering of the PH community ever. In fact, we're sold out!

For those of you who are attending, we have put together key information you need to know about hotels, shuttles, parking, program books, travel tips, Kids' Room, Research Room and more.

Check out these key details

Woman Sings Anew After 2nd Double Lung Transplant

(CBS News) - Opera singer Charity Tillman-Dick calls her disease the "reverse Grinch effect." She has an enlarged heart, and suffers from idiopathic pulmonary hypertension. Charity, 27, has had two double-lung transplants. Doctors say she would have died without them. "CBS This Morning" visited her in February in a hospital room at the Cleveland Clinic, and she was hoping, praying that she might sing again. Read article and watch news video

Pulmonary Hypertension in Patients With Martorell Hypertensive Leg Ulcer: A Case Control Study

(7th Space) - Martorell hypertensive ischemic leg ulcer (Martorell ulcer) is characterized by distinct alterations in the arteriolar wall of subcutaneous vessels, leading to progressive narrowing of the vascular lumen and increase of vascular resistance. These changes are similar to the alterations observed in pulmonary arterioles in patients with chronic pulmonary hypertension (PH). Read article

Wednesday, June 13, 2012

Conference Sold Out!

Due to overwhelming response, PHA's 10th International PH Conference and Scientific Sessions is SOLD OUT. We are sorry to disappoint, but at this point we are unable to take advance and on-site registration.

If you are not attending Conference, you can follow Conference happenings on our Conference blog, on PHA's Facebook page, and Twitter (#PHAConference). Also, recordings of many of the sessions will be available on PHA’s website over the coming months.

VentriPoint Multi-Centre Clinical Trial Focuses on Ultrasound Diagnostic Tool for Heart Analysis

(Sys-Con Media) - VentriPoint Diagnostics Ltd. is pleased to announce that Mayo Clinic has joined its multi-centre clinical trial to evaluate the use of an ultrasound diagnostic tool (the VMS(TM) heart analysis system) for patients with pulmonary arterial hypertension (PAH). Robert Frantz, M.D., a consultant in the Cardiovascular Division and Associate Professor of Medicine, College of Medicine, Mayo Clinic is the lead investigator for the clinical trial site in Rochester, MN. Read article

Inhibition of PBEF is a Possible Therapeutic Target for Pulmonary Hypertension

(Science Codex) - Inhibition of pre-B Cell Colony-Enhancing Factor (PBEF) could be a potential therapeutic target for pulmonary hypertension (PH), according to a preclinical study in an animal model of PH. Read article

Tuesday, June 12, 2012

Support Lungs for PHers by Friday, June 15

Proposed changes to the Lung Allocation Score (LAS), now open for public comment, even the playing field for pulmonary hypertension patients. Vote yes and include comments about your connection to PH or transplant.

Support lung allocation changes by Friday, June 15

Monday, June 11, 2012

Track Your Health Info

Between tracking medication dosages, pharmacy numbers, insurance plans and more, pulmonary hypertension can be a time consuming disease. By taking the time to plan ahead, you can get and stay organized. Coordinating your healthcare doesn't have to stand in the way of doing the things you love.

The Empowered Patient Online Toolkit was designed by experienced PH patients and healthcare professionals to help you create your own PH-specific medical binder. Download the resources, personalize them, and then either save them to an electronic flash drive or print them out and store them in a three-ring binder with tabs. Bring your binder or flash drive with you to all appointments and any time you are admitted to the hospital.

Get started with tracking your health info

Friday, June 8, 2012

New Calendar Makes It Easy to Find Support Group Meetings

Find a meeting near you! PHA created a sortable, easy-to-use calendar that can help you find support group meetings going on in your state and across the country. Now it's easier than ever to meet others living with PH and learn more about the disease.

View support group meeting calendar

Thursday, June 7, 2012

Vote for Shari! PH Event Organizer Who Raises Awareness & Research Funds Nominated for Award

This past weekend 800+ people gathered from the Anaheim, Calif., area to support the memory of Taylor Renee Caffrey (pictured right at bottom) and to raise money for pulmonary hypertension research. Taylor’s mother, Shari, created Taylor’s Wish and organizes a 5K fun run/walk every year to support PHA’s research programs. Her efforts have raised over $60,000 for the cause and awareness in her community (not including this year’s funds). For the work that she does for the PH community, Shari has been nominated for an award that she needs your votes to win.

Read more

Mylan Canada Receives Health Canada Approval for Generic Version of Tracleer®

(Canada Newswire) - Mylan Inc. today announced that its Canadian subsidiary, Mylan Pharmaceuticals ULC, has received approval from Health Canada for Mylan-Bosentan Tablets, 62.5 mg and 125 mg. Mylan-Bosentan is the generic version of Actelion Pharmaceuticals Ltd.'s Tracleer®, used for the treatment of pulmonary arterial hypertension. "Providing Canadians access to high quality, affordable medicines is our primary goal," said Dick Guest, Mylan Canada's President and CEO. "By providing access to more affordable generic drugs, Mylan helps to reduce the burden on our health care system, benefiting all Canadians." Read article

Wednesday, June 6, 2012

Web Resources Just For Teens

Get tips for talking to peers and teachers about PH, planning for college, and ways that teens are raising awareness. Also connect to other teens on our social network just for teens.

Visit PH Teens web section

PHA's Rich History

PHA now has an interactive timeline that captures the milestones that brought the PH community to where it is today. Scroll through the pictures and videos to reminisce about our community’s greatest achievements.

Check out PHA's timeline

Tuesday, June 5, 2012

Conference Kids’ Room: Field Trip Announced, Registration Due June 8, Forms Due June 11

This year’s Kids’ Room field trip is to (drumroll please)…….. SeaWorld Orlando! The field trip requires pre-registration; children under age 6 must be accompanied by an adult.

Kids’ Room registration is due Friday, June 8. Forms are due Monday, June 11.


Learn more about the Kids’ Room field trip and other activities 
Register now | Fill out forms

Learn About the Medically Led Sessions at Conference

PHA’s 10th International PH Conference and Scientific Sessions offers a great deal of education for patients and their family members. For many attendees, the Medically Led Sessions are a highlight of Conference. These sessions are concurrent educational sessions for patients and family members led by panels of medical professionals, and, for the first time ever, patients on select sessions.


Read more in PHA's Conference blog

Monday, June 4, 2012

“Breathtaking” Across Europe

PHA Europe’s Spring newsletter, Mariposa News, just came out. Articles include:

• “Breathtaking” across Europe: National reports of the big day
• Austria says lights, camera, PH!
• Dancers lead the way for PH in Belgium
• Italy raises the sail for PH
• Poetic performance highlights PH in Poland
• Slovenian celebrities unite to mark Rare Disease Day
• Spain stops traffic with their “Breathtaking” messages
• Sweden builds relationships with the rare diseases network

Read the Spring 2012 Mariposa News (PDF)

Friday, June 1, 2012

Online PHA Conference Registration Closes June 8!

More than 1,100 PH community members have already registered for PHA’s 10th International PH Conference and Scientific Sessions taking place June 22-24 in Orlando, Fla. If you haven’t registered yet, you can still take advantage of online registration until Friday, June 8 at 3 p.m. ET. Don’t miss out on this opportunity to join your fellow PH community members!

Register now

PHA Thanks Organizer of "Take a Breath for PH - Get Moving for MS"

PHA extends a warm thank you to Melinda Grubich for organizing “Take a Breath for PH – Get Moving for MS,” which was scheduled for May 12 in Dewitt, Mich. This event, held in memory of Melinda’s daughter Mackenzie Jade, who lost her battle with PH in 2009, benefited both PHA and the National Multiple Sclerosis Society (NMSS). Unfortunately, the event was canceled due to inclement weather, but still managed to raise more than $10,000 toward finding a cure for pulmonary hypertension and multiple sclerosis.