Monday, September 30, 2013

Tree in Winter by Tamara

This is how Tamara copes with pulmonary hypertension.  

Dr. Robyn Barst Honored by European Respiratory Society

This month, PHA Executive Vice President Carl Hicks traveled to Barcelona, Spain, to receive a posthumous award from the European Respiratory Society for Dr. Robyn Barst on behalf of the Pulmonary Hypertension Association and the Barst family. Dr. Barst is the first ever to receive the honor posthumously and the first non-pulmonologist to receive an award. The award included a 10,000 prize that was contributed to PHA. In receiving the award, Carl gave a presentation about Dr. Barst and her life's work.

Learn more about Dr. Barst and the PH pediatric research fund she established

Beer, Fish & Chips, Live Music & PHriends

Spend the day among friends on the water enjoying great food, drinks, live music by The Subtle Hustle, and multiple raffles, including Baltimore Ravens tickets.

Join us for the 5th Annual Pulmonary Pints: PubDay for PH in Baltimore, Md., on Oct. 12. Learn more and register

Sunday, September 29, 2013

Bride on Transplant List Shares Her Story

Twenty-one-year-old Breana Swenson will be marrying the love of her life next month. The wedding and her upcoming honeymoon in Hawaii are taking her mind off her struggles with pulmonary hypertension.

Watch video

Saturday, September 28, 2013

Help FDA Give Patients a Bigger Voice

The Food and Drug Administration is creating more ways for you to be an active participant in decisions about the approval and safety of your medical products thanks to FDA’s new patient network website.  Whether you are a patient, family member, caregiver or advocate, you can bring your voice to medical product decision making. Get informed about new product safety and new product approvals, chat with FDA experts, and take action. 

Visit www.PatientNetwork.FDA.gov

Friday, September 27, 2013

Ask the Expert with Paul DelPonte from National Alliance for Caregiving

Check out this recording from the National Lupus Foundation of an ask the expert session with Paul DelPonte from the National Alliance for Caregiving.

Watch presentation

Teddy Bears with PIC Lines

Sean and Britt McNiff have started a nonprofit organization called Beats Per Mimi, Inc. in honor of their 4-year-old daughter Mimi who has pulmonary hypertension. Beats Per Mimi raises awareness for pediatric PH, raises money for PHA's Robin Barst Pediatric Research and Mentoring Fund, and sends out packages of support to families of kids with PH.

Each family receives a teddy bear with either a broviac, PIC line or zebra striped backpack. They also receive pediatric PH awareness T-shirts and a "Hospital PHun Pack" filled with face paint, window markers, streamers and other fun stuff.




Thursday, September 26, 2013

PH Fact: Sickle Cell Disease & Pulmonary Hypertension

In honor of the Sickle Cell Disease Association's annual convention going on right now, we want to highlight the connection between sickle cell disease and pulmonary hypertension. PH is an increasingly recognized complication of SCD. Studies show that approximately 30% of screened adult patients with SCD develop mild PH in adulthood. In 10% of patients, the PH is more severe. Recent autopsy studies also suggest that up to 75% of sickle cell patients show changes in the lung tissue at the time of death, indicating the existence of pulmonary arterial hypertension (PAH).

Learn about pulmonary hypertension associated with sickle cell disease: patients | medical professionals

Going to be at the convention? Come over to the PHA booth and say "hi!" to Kim Lamon-Loperfido today (Thurs.)!

Wednesday, September 25, 2013

Meet You at the Finish Line

Over 125 walkers enjoyed the beautiful early fall weather this past Saturday morning at PHA Midwest’s O2 breathe Walk in Palatine, Ill., raising over $18,000. This and other Chapter events increase awareness and raise further funding for PHA research and programs for patients and families.

Learn about Chapter events in your area

Question of the Week: Worrying

Question of the Week: What do you worry about most? How and with whom do you share your worries? Share in the comments section below.

Fill-in-the-Blanks Press Pitches for Awareness Month

“My thought process has changed since the first article: This is not about me, this is about pulmonary hypertension and the lack of patients getting appropriate treatments and timely diagnosis. Whenever we, the patients, can put a face to PH we have the potential to help many.” --Jeannette Morrill (pictured right) on why she reaches out to reporters to put PH in the news

Simplify the process of telling your story with one of two Awareness Month press pitches. Simply fill in the blanks in one of the these pre-written pitches to include a few sentences about your experiences, and then email it to local reporters.

View and download Awareness Month press pitches

Tuesday, September 24, 2013

Early Retirees are in Luck

The Affordable Care Act has some major provisions launching next month. Today, someone with a chronic health condition may be offered a policy at a significantly higher rate than someone in good health. Fortunately, unlike many individual policies offered today, the law calls for more generous coverage. This federal healthcare law could serve as a major change for those who find themselves in early retirement.  State exchanges now make it possible for many considering early retirement, including those with a pre-existing medical condition, to find insurance coverage.

Read article

Pulmonary Hypertension on ESPN

Eduardo Martínez, an 18-year-old with PH, met the Patriots as part of the “Make a Wish” program. His story was told in a special report of ESPN for Hispanic Heritage Month.

Watch the video

Hipertensión Pulmonar en ESPN: Deportes

Eduardo Martínez, paciente con hipertensión pulmonar, visitó a los patriots (equipo de fútbol americano) como parte del programa "Mi Deseo". Su historia fue presentada en un reportaje especial de ESPN para el Mes de la Herencia Hispana.

Scleroderma Capitol Hill Day Next Week

This fall PHA and our friends at secondary disease organizations are working hard to give you the opportunity to advocate on Capitol Hill. On October 1, our friends from the Scleroderma Foundation are hosting a Capitol Hill Day, giving patients and caregivers the chance to meet with members of Congress and/or their staff to advocate for research and funding.

Learn more and register today

Monday, September 23, 2013

El “Kit de la Esperanza” ya está disponible en español

Gracias a ustedes, los voluntarios hispanohablantes de la PHA, nuestro “Kit de la Esperanza” ahora está disponible en español. Solicita uno desde ahora para aprender más acerca de esta enfermedad y encontrar recursos de apoyo cerca de ti.

New! Booklet for Kids

PHA recently released a new booklet for kids and teens ages 10 – 14 who have an adult in their life diagnosed with pulmonary hypertension. The booklet is available as part of the PH Handbook for Families, which includes the booklets of your choice and PH-related activity sheets.

Request your free PH Handbook for Families

How Does Your Art or Crafting Help You Cope with PH?

Patients dealing with a chronic illness like pulmonary hypertension are often overcome with stress. Luckily there are many ways to cope with PH. Many patients and family members use their art or crafting to deal with the daily pressures of living with PH. What do you do?

Show us how you grapple with PH through art or crafting. Whether it is through jewelry making or simply painting a picture, art can be a delightful and engaging way to get your mind off of the tension you face. Consider knitting, drawing, sculpting, or building anything you can possibly imagine. Share a photo of the arts and crafts you do to help you cope with living with pulmonary hypertension.

Submit your photo | View resources on coping

Sunday, September 22, 2013

29-Year-Old Army Veteran Awaiting Transplant

"Imagine not being able to laugh or cry without feeling as if you were suffocating. Imagine going from an active lifestyle to not being able to walk even a short distance without losing your breath. Imagine being on oxygen 24 hours a day. Imagine your heart being six times larger than average and covering three-fourths of a lung. Imagine if the only chance you had to live was to have a double lung transplant that costs nearly $800,000. And now imagine if you were only age 29."

Read Journal Star article

Faces of PH: Larry Furthers the Cause in Honor of His Wife Judy

Larry was looking for a way to get involved during PH Awareness Month in November 2009. His wife Judy had been diagnosed with pulmonary hypertension in 1998, and they have been involved with PHA ever since. After finding Web of Friends on PHA’s website Larry thought that this was a “no brainer” way to get involved.

“We can’t find a cure without the dollars so I wanted to do something that would further the cause.” Read more about Larry’s story and how he and others have used a virtual fundraiser to raise money for the cause

Start a Virtual Fundraising Page in support of the Race of Our Lives

Saturday, September 21, 2013

Systemic Sclerosis: Interstitial Lung Disease and Pulmonary Hypertension

As part of "Scleroderma Week at the ATS" and in conjunction with PAR partner the Scleroderma Foundation, the ATS presented a webinar is entitled, "Systemic Sclerosis: Interstitial Lung Disease and Pulmonary Hypertension" hosted by Tracy Frech, MD, MS, of the University of Utah.

Watch the recording

Possible New Approach to Fighting Severe and Progressive Pulmonary Hypertension

Researchers from Virginia Commonwealth University, Stanford University, the University of Colorado and the University of Michigan recently reported results from a study that shows macrophage-derived leukotriene B4 (LTB4) causes cell death in the lining of the pulmonary vessel. This new finding opens up a new area to explore in the treatment of pulmonary hypertension.

Read article

Friday, September 20, 2013

PH Goes to College

It's back to school time for students, but when you have pulmonary hypertension it can change the flow of the college experience. Whether you are a commuter or live on campus, having PH and going to college is rough.

Read more from Kiara on PHA's Generation Hope blog

Congenital Heart Disease and Pulmonary Hypertension

Check out this PHA Classroom recording to learn about the various forms of congenital heart disease that might lead to pulmonary hypertension and take a look at the options available for patients.

Watch recording

Question of the Week: Fall Activities

Question of the Week: What is your favorite fall activity? Answer in the comments below.

Wednesday, September 18, 2013

PAH Screening Recommendations for Connective-Tissue Disease Patients Published

As we reported earlier, researchers from an international group of medical experts have developed the first recommendations for screening and detection of pulmonary arterial hypertension (PAH) in connective-tissue disease patients that are evidence- and consensus-based. The recommendations, which call for annual screening for PAH in systemic sclerosis patients and patients with mixed or other connective tissue diseases with scleroderma features, were published last week in the medical journal Arthritis & Rheumatism.

The development of these recommendations was made possible through a joint project of the Pulmonary Hypertension Association and the Scleroderma Foundation through unrestricted medical education grants from Actelion Pharmaceuticals, US, Inc., Gilead Sciences and United Therapeutics Corporation.

Read more | Learn more about PH & Scleroderma


Tuesday, September 17, 2013

Body Art, Music and Hotdogs Spell PHun in Palatine, IL, this Saturday

Join PHA's Midwest Chapter in Palatine, Ill., this Saturday for our O2 breathe Walk. Laine Too Body Art will be on site offering temporary body art, A-Z Entertainment will be at the starting-line handling the music, and Christopher Paul Photography will be on course capturing all your team photos, so don't miss out on the fun!

After the walk plan on lunch or dinner at Photos Hotdogs Palatine (301 N. Northwest Hwy., Palatine), where 25% of your order will be given to PHA.

Join us Saturday

New Online Resource!

Scoring a media success is easier once you understand how the process works. That’s why PHA updated our online media guide to include basic steps, helpful videos and adaptable Awareness Month press templates for you to use. Take a look

PHA's Research Program Opens Doors for Grantees

Recently, several of PHA's medical leadership and staff members attended a series of meetings with federal agency partners to discuss the work and successes of the Pulmonary Hypertension Association. In the recording below of her presentation, Dr. Karen Fagan, Chair-Elect of the PHA Scientific Leadership Council and Professor of Internal Medicine and Pharmacology at the University of South Alabama, discusses the particularly successful nature of the PHA Research Program.

Over the past ten years, the Pulmonary Hypertension Association has secured more than $12.5 million in research commitments to PH-related research through partnerships with organizations such as the National Institutes of Health and American Thoracic Society.

Learn about how these dollars have led to retention in the field of PH and further funding of PH projects in the short recording below (2.19 min) or on YouTube.

Monday, September 16, 2013

Join Us for the Baltimore Walk at Inner Harbor

In bustling Baltimore City, the picturesque Inner Harbor provides a refreshing break from the frenzied pace of life. Native Baltimoreans and tourists alike slow down as they circle the Harbor, enjoy the bay breeze and admire the surrounding businesses.

On Sunday, Oct. 6, those that take a moment to soak up the Harbor’s beauty will be treated to a unique sight: a parade of periwinkle and zebra stripes.

From 8 a.m. to 12:30 p.m. on Oct. 6, pulmonary hypertension (PH) patients, caregivers, medical leaders and community members alike will walk from Rash Field along the Inner Harbor Promenade as a part of the 2013 Baltimore Walk for Hope.

The annual Walk for Hope raises money for essential Pulmonary Hypertension Association (PHA) programming and research — and this year, with its prime location in Inner Harbor Baltimore, the Walk will also serve as an ideal means of spreading awareness about PH.

This year you can look forward to a fun-filled and meaningful day at the Harbor, complete with presentations from PH patients and medical leaders (including the Walk’s medical chairs, Dr. Myung Park and Dr. Stephen Mathai), music, food and fun — and, of course, innumerable opportunities to spread PH awareness.

PHA and the PH community combat PH through fundraising and educating—and, as a participant in the 2013 Baltimore Walk for Hope, you can help further both of these goals. Register for the Walk online today to show your support for the cause of spreading awareness about and ultimately ending PH.

We can’t wait to walk for hope with you!

Caregiver Shout-Out: Karen Paskawych

"Everything I have accomplished in my progress with the PAH, everything I will accomplish from this point forward, is thanks to her. She deserves much more than a shout-out ... but I figure this is one small way to say thank you for everything she does as a caregiver, as a wife, and as a friend."
- Kevin, honoring his wife and caregiver, Karen

Read more Caregiver Shout-Outs and submit your own

Sunday, September 15, 2013

Webinar Tuesday: What's New in the World of Scleroderma

Hear from Laura Hummers, MD, Co-Director of the Scleroderma Center at Johns Hopkins, about the latest in the field of scleroderma this Tuesday at 1 p.m. ET/10 a.m. PT.

Register now

Young PH Patient to Be Ambassador of Hope at Baltimore Walk

To the untrained eye, Esther Grace Liu of Fairfax, Va., seems like a typical 3½-year-old. This summer, she attended day camp for the first time and vacationed at Disney World with her parents and brothers. However, though Esther appears lively, she also exhibits the telltale signs of pulmonary hypertension, and this fall, Esther’s family is fighting back by getting involved in the Baltimore Walk for Hope.

Read more

Josiah's Journey with PH Plus Congenital Heart Disease

"When we met Josiah he was living in a group home for medically fragile children. At that time he was 4 years old, very tiny, non-verbal and had just started to walk. He was wholly g-tube fed and on oxygen 24/7. He would become cyanotic when you took off his oxygen to pull his shirt over his head. He was considered to be terminally ill and non-adoptable. His prognosis was that he would be dead within a year without a heart lung transplant. However, he was not considered a candidate for a transplant because he was in the foster care system. He carried diagnoses of primary pulmonary hypertension, complex congenital heart disease, severe infantile scoliosis, and Noonan's syndrome. He was also, at that time, thought to be autistic."

Read full story

Saturday, September 14, 2013

RARE Patient Advocacy Summit

On Friday, Sept. 20, there will be an in-person patient advocacy summit for rare disease patients, advocates, caregivers, family members and friends that will also be webcast.

Learn more and register today

Find a Doctor with Experience & Expertise in PH

Because pulmonary hypertension is such a complicated disease to diagnose and treat, PHA encourages patients to seek care from doctors with experience and expertise in pulmonary hypertension. Check out our Find a Doctor Directory and list of questions to ask when choosing your PH specialist.

PHA Find a Doctor Directory

PH Bill Introduced in Senate, Endorsed by American Medical Association

The Pulmonary Hypertension Research and Diagnosis Act (H.R. 2073/S. 1453) – the only PH-specific bill in Congress – made exciting progress last month. It was introduced in the Senate and received support from the American Medical Association (AMA).

Read more | Email your senators now

Friday, September 13, 2013

Caregiver Phone Support Group Next Wednesday

PH Caregivers: Join us next Wednesday to share tips, info & support with other PH caregivers! Details at www.PHAssociation.org/Caregivers/Support

Get Your Questions Answered

Our team of experienced patients and caregivers is ready to answer your questions about living with pulmonary hypertension. While they can't answer medical questions, they can point you in the direction of information and resources available to PH patients and family members.

Ask a question of a PH Email Mentor

Medical Professionals: Free Pediatric PH Continuing Education Course

A new course is now available for FREE nursing, pharmacy, and pharmacy tech continuing education credit:

Pediatric Pulmonary Hypertension
In this course, Michelle Cash describes the various drug therapies for children with PH, enumerates five areas to ensure correctness when administering medication to children with pulmonary hypertension and discusses available resources for pediatric PH patients and their caregivers. 

To view this course offering, visit: nursing course | pharmacy course

See what PHA Online University has to offer

Thursday, September 12, 2013

Parents Call on School Issues

Parents of PH Kids: How did the first weeks of school go? Join other parents to discuss PH-friendly school and extracurricular activities for your child. Call details at www.PHAssociation.org/Parents/Support

Women in Government PH PSAs

An association of women in state legislatures has recorded radio public service announcements explaining pulmonary hypertension and the importance of early diagnosis. Thanks, Women in Government (WIG), for collaborating with PHA on writing these spots for Awareness Month 2013 and beyond. And thank you, Bayer, for connecting us.

See how WIG has been sharing PH info online

Question of the Week: Playing Music


Question of the Week: Do you play a musical instrument? Please answer in the comments below.

Wednesday, September 11, 2013

Patient in Arena Drug Trial Experiences Heart Problem

Arena Pharmaceuticals said a patient being treated with the company's experimental drug being tested for the treatment of pulmonary arterial hypertension (PAH) experienced a heart rhythm disorder that may have been related to the treatment.

Read article

PHA Program Highlight: Envelope of Hope

PHA's Envelope of Hope program provides newly diagnosed patients with access to information about pulmonary hypertension. With information on treatments, coping and services offered by PHA this easy-to-understand guide is an invaluable resource for patients and families after receiving a PH diagnosis. More than just information, the Envelope of Hope provides support and a way forward to patients first dealing with this disease.

This information kit is completely free to patients and families and is available either by mail or electronic download so you can get these resources even faster! Order your envelope of hope today

Help us continue to make free information available to newly diagnosed patients by donating today.

You Can Fight for the Cause in the Chair You’re Sitting In

Did you know that you can support the Race of Our Lives campaign from the comfort of your own home? If you are unable to host a Unity Miles event in your area - consider setting up a Virtual Fundraising Page! It's as easy as choosing a fundraising goal and sending the link to your family to help raise funds.

Funds raised on your page will go towards sponsoring miles in the Race of Our Lives and your name will be placed on the Race map along with the name of the person you are honoring. You can also earn other perks like your name in PHA's newsletter Pathlight and cool campaign gear.

Learn how to get started with your virtual fundraising page today

Tuesday, September 10, 2013

Time to Start Planning Your Awareness Month Activities

We've just launched our 2013 Awareness Month website chock full of ideas large and small for getting involved in the fight for a cure. With Awareness Month just under two months away, this is a great time to plan your awareness-raising and fundraising activities. This year's theme is "Racing Toward a Cure" in solidarity with Team PHenomenal Hope, the team of women training for an intense, non-stop biking relay across the United States next June in support of PH research and programs.

Just like this cycling challenge, the race to cure pulmonary hypertension is also a relay. It depends on each of us to carry the baton a little further. With the PHA staff as your pit crew and PH resources galore at your fingertips, we make getting involved easy.

Pick up the baton and join the action this November! Check out our Awareness Month site and get started on your plans today!

Share of the Week: Great Color Run Video!

Josh and Lindsey Belt in Louisiana are holding a color run in honor of their son Joel to raise awareness and funds for the cause. They created this incredible video to spread the word about their event. Check it out below and share the following link to the video with your friends: http://www.youtube.com/watch?v=vDDgWFNpAtY


Monday, September 9, 2013

HHT Foundation Launches New Website

PHA is excited for our friends at the HHT Foundation International on their brand new website!

Visit the HHT Foundation International website | Learn more about PH and HHT

CO for the 4th Annual Colorado Run for PH


Don’t miss this exciting event- including a post-event expo, kids’ area, silent auction and education session! Join us on Sunday, Sept. 15 at City Park in Denver, CO for the 4th Annual Colorado Run for PH!

Register today

Sunday, September 8, 2013

Blocking Molecular Pathway Reverses Pulmonary Hypertension in Rats

A new study from researchers at the Stanford University School of Medicine published recently in Science Translational Medicine suggests that pulmonary hypertension may be caused by an inflammation-producing molecular pathway that damages the inner lining of blood vessels. The results suggest that medications to block this pathway could lead to a possible cure for pulmonary hypertension as well as a better understanding of other diseases involving inflammation of blood vessels, such as coronary artery disease.

Read article

Friday, September 6, 2013

PH Fact: You Can Fight Back with Your Local Chapter

Did you know that PHA has launched three local chapters? PHA chapters allow you the opportunity to get involved in the fight for a cure in your local area. You can get involved as much as you have the time and are able, from attending events to forming a fundraising team. O2 breathe Events bring caregivers, patients and medical professionals together in major cities across the nation to raise urgently needed funds for life-saving research and support programs that help the estimated 30,000 plus Americans that are affected by this unpredictable and potentially life-threatening disease.

So far we have launched chapters in the New York tri-state area, San Francisco Bay area and Midwest states surrounding and including Illinios.

Get involved in the fight today!

PCORI Seeks Reviewers with Rare Disease Experience

Major research institute seeking…you! Are you a pulmonary hypertension patient or family member interested in contributing to rare disease research by reviewing researchers’ requests for grant money? If so, check out this opportunity to become a proposal reviewer with the Patient Centered Outcomes Research Institute (PCORI).

Learn more and apply by Sept. 12

New Classes on CTEPH & Exercise-Induced Pulmonary Hypertension

The latest offerings from PHA Classroom are on chronic thromboembolic pulmonary hypertension (CTEPH) and exercise-induced pulmonary hypertension (EiPH).

Chronic Thromboembolic Pulmonary Hypertension – What You Need to Know 
Presenters:
Richard Channick, MD, Massachusetts General Hospital, Boston, Mass.
Amanda Harvey-McKee, former CTEPH patient, Florissant, Mo.
Learn about chronic thromboembolic pulmonary hypertension (CTEPH) from two unique perspectives. Richard Channick, MD, from Massachusetts General Hospital, provides an overview of the disease and available treatments. Amanda Harvey-McKee, a former CTEPH patient, will discuss her experience living with CTEPH and the changes in her life since undergoing a pulmonary thromboendarterectomy (PTE).

Exercise-Induced Pulmonary Hypertension – What Is It and What Do We Do About It?
Presenter: Abraham Babu, BPT, MPT, PhD, Manipal University, Manipal, India
This webinar discusses the importance of assessing for exercise induced pulmonary hypertension (EiPH), especially in those at risk for pulmonary hypertension. Abraham Babu, a physical therapist from Manipal University in Manipal, India, will review the current theories and practices used to manage EiPH.

Thursday, September 5, 2013

Chicagoland Come Walk with Us!

Come out to Palatine, Ill., on Sept. 21 for a day of fun with PHriends at PHA Midwest Chapter’s O2 breath Walk. This event will be raising much-needed awareness about pulmonary hypertension as well as funds for PH programs and research. Step out for the cause!

Register today and consider starting a fundraising page

Faces of PH: CTEPH Patient Jim Gebhardt

Jim on his cross-country motorcycle ride
“If there is something in your life that drives you, that excites you, that makes you want to face each new day, I encourage you to try to maintain that activity. Look for creative and effective ways to manage your pulmonary hypertension and do not allow your PH to manage you."

Read the rest of Jim’s story | 10 Things to Do for Better Living with CTEPH

Wednesday, September 4, 2013

Macitentan Trial Shows Reduced Morbidity and Mortality in Pulmonary Hypertension Patients

The phase 3 SERAPHIN drug trial for macitentan showed lower morbidity and mortality rates in pulmonary hypertension patients than those who received the placebo. Macitentan, which will be marketed as Opsumit if it is approved by the FDA, is an investigational dual endothelin-receptor antagonist being developed by Actelion Pharmaceuticals. Read article

Study findings were presented at the European Society of Cardiology (ESC) this past weekend and will be presented at the European Respiratory Society (ERS) Annual Congress in Barcelona, Spain, on Sept. 9 and 10. Learn more

Read about PH drugs approved in the U.S. | PH treatments around the world

Question of the Week: Travel to Your Specialist


Question of the Week: How far do you have to travel to see your pulmonary hypertension specialist? Please answer in the comments below.

PHA Wins Publications Award

PHA is proud and excited to share the news that our 2012 annual report has won a 2013 Apex Award for Publication Excellence! The honor recognizes outstanding graphic design, editorial content and achievement of overall communications effectiveness and excellence. Our publication was one of 78 reviewed by the contest judges. The contest is run by Communications Concepts, Inc., which offers services to publishing, PR and marketing professionals. This is the fourth consecutive year that PHA's publications have been recognized with an Apex Award of Publication Excellence.

Check out our award-winning publication | See PHA's other awards

PHA Staffer Dedicates Triathlon to Race of Our Lives

from Roni Rivera

Starting this month, PHA is asking our PH community to join Team PHenomenal Hope in the Race of Our Lives campaign. I’m Roni Rivera, and as a member of the PHA Special Events Department staff, I am involved daily in asking folks to gather friends and family to cross miles together in solidarity with the team’s cycling journey across the U.S. And I am turning my participation in a fall triathlon into a Unity Miles event.

I’ve decided to do this because I am moved by Team PHenomenal Hope’s courageous goal and dedication to raising awareness and funds for the PH community and by the spirit PHA is bringing to the Race of Our Lives campaign. I share a passion for endurance sporting events with Dr. Patty George, the PH physician leading Team PHenomenal Hope. After biking and talking with Patty (pictured on right) during a visit to Pittsburgh this month, I did not want to miss the opportunity to be a part of this special initiative. PHA is encouraging people to show solidarity by crossing miles any way they like – walking, rolling, running or even virtually.

On Sept. 29, I will be racing in a Half IronMan triathlon in Augusta, Ga. The course covers 70.3 miles -- a 1.2-mile swim, a 56-mile bike ride, and 13-mile run. Like Team PHenomenal Hope, I will race in honor and memory of pulmonary hypertension patients while spreading awareness of this disease. I will share my journey with friends and family and will wear PHA apparel when I compete. I know that being a part of this campaign and feeling the solidarity of this community will carry me through this race with a unique energy.

If my efforts motivate you to donate to the campaign, I encourage you to purchase a mile through the Sponsor a Mile campaign. If you purchase a mile in honor or in memory of someone, please email me at RoniR@PHAssociation.org to let me know. I will keep a list of every supporter’s name and carry it with me along the 70.3-mile triathlon course on Sept. 29. I will be purchasing a mile myself as well, in honor of my friend and coworker, Josh Griffis. His courage and fight in the face of PH inspires me.

I invite you to follow my training and journey on Facebook.

Tuesday, September 3, 2013

Unexplained Breathlessness Not Okay Say Australian Doctors

Doctors from the Pulmonary Hypertension Society in Australia spread awareness about pulmonary hypertension and the importance of early diagnosis by stressing that unexplained breathlessness can be something very serious.

Read article | Read about pulmonary hypertension symptoms | Get involved in our early diagnosis campaign

Share of the Week: Sometimes it's PH Global PSAs

What: Sometimes it's PH: An Early Diagnosis Campaign

Why:  To reduce time from symptom onset to diagnosis of pulmonary hypertension by right heart catheterization

How you can spread the word: Share these campaign videos converted for countries around the world

Spread PH awareness worldwide, share these global campaign videos.