Sunday, March 31, 2013

Patient-to-Patient Support Line

The Support Line can make a difference in your life!
Whether you’re newly diagnosed or have been living with PH for years. Whether you take care of a loved one with PH or you simply are a friend or family member who wants to better understand the disease or want to get involved. The Support Line is for any and all questions!

Saturday, March 30, 2013

I Have So Many Doctors … Whom Do I Call?!

For patients with more than one chronic illness, a coordinated health plan and a coordinated health team are key to positive outcomes. As a person with pulmonary arterial hypertension and congenital heart disease, I deal with the delicate balancing act of coordinating different medical
teams continuously. This past spring, I had the privilege of interviewing congenital heart disease specialist, Dr. Alison Meadows, about coordinating care among specialists.
As the director of the Adult Congenital Heart Program for Northern California Kaiser Permanente, she deals with a variety of congenital heart patients every day, many of whom are living with multiple chronic diseases such as PH, liver disease, etc. Here she answers some of my questions about how to figure out just who’s responsible for what.Another way to help with coordination is the Empowered Patient Online Toolkit. It was designed by experienced PH patients and healthcare professionals to help you create your own PH-specific medical binder.

Friday, March 29, 2013

Family Gets Big Surprise On Good Day!

PPH Patietn Weston has been in intensive care at the Children's Hospital of Philadelphia for a year while he waits for a heart and lung transplant, but half his family is still living in his home in Tennessee. His mother and two of his six siblings are here in Philadelphia for him. With this support, Weston is beating the odds. Watch his suprise

PH Treatments: What's On the Horizon

It is an exciting time for PAH research. Over the past 17 years, many PAH therapies have been approved by the FDA. Join Dr. Michael McGoon for a presentation about current treatments and treatments in the pipeline. Please register for this meeting to learn more.

Dr. McGoon is a consultant in the Division of Cardiovascular Diseases at the Mayo Clinic and Professor of Medicine at the Mayo Clinic College of Medicine. After attending medical school at Johns Hopkins, he completed subspecialty cardiology training at Mayo and has been on staff there since 1983. Dr. McGoon is currently on PHA’s Board of Trustees and is a distinguished advisor to PHA’s Scientific Leadership Council.

Coverage Connection: How Will Sequestration Affect Healthcare? A Quick Q & A.

Sequestration began almost a month ago, and since then there has been a lot of discussion about what is being cut and what is being spared. Within all the talk, however, is the question you’ve probably been asking: how will sequestration affect me? This question is the topic of the latest Coverage Connection, which discusses how sequestration affects PHers and healthcare in general.

This issue of Coverage Connection covers all the important questions about sequestration, from the basics, such as what sequestration is and why it’s happening now, to the PH-specifics, such as how sequestration will affect medical research and mental health services. Most importantly, you’ll learn how you can tell Congress your thoughts on sequestration. If you enjoy this issue of Coverage Connection, sign up to get it in your inbox every month!

Thursday, March 28, 2013


By participating in pulmonary hypertension research, you can provide scientists with information that may be vital to the development of new treatments for PH.
Clinical trials are studies that come at the end of a long and careful PH research process. They involve the study of real patients to determine whether promising treatments are safe and effective. There are currently hundreds of trials on PH being conducted in the United States and around the world.

Patient Support Call

PHA is hosting our monthly Patient Telephone Support Group. We are happy to bring patients together for a "meet and greet" conversation. We will also be giving national updates.To participate, you will need to dial into our toll-free 866 number. Internet is not required, but if you do use the Internet, you will be able you to follow along with slides that will be shown for a small portion of the call.

Register Today 

Wednesday, March 27, 2013

PHA On The Road 2013

PHA is gearing up to head back “on the road” – and we hope to see you there! PHA on the Road: PH Patients and Families Education Forums will be visiting 4 new areas this year: Denver, Colo. (June 1); Boston, Mass. (June 8); Durham, N.C. (June 15) and San Francisco, Calif. (June 29).

Attendance at these education forums is FREE – all you need to do is register. Don’t wait, Register Today!

Upcoming Webinar: Inotropic and Vasopressor Therapy for Decompensated Right Heart Failure (April 9; 1:30p.m. ET/10:30 a.m. PT)

Looking to learn more about heart failure related to pulmonary hypertension?  Dr. Gautam Ramani, an associate professor of medicine at the University of Maryland, will be discussing the use of  vasopressor and inotropic therapy in PH. This webinar will include an opportunity for Q&A with Dr. Ramani as well as free CME!  Register Now

Question of the Week

What word(s) of encouragement would you give to someone who has been newly diagnosed?

Tuesday, March 26, 2013

Faces of Pulmonary Hypertension: Family Fundraisers: the McNiff Family

Britt and Sean McNiff fundraise in honor of their young daughter, Mimi. Last year, they raised more than $12,000 for the Robyn Barst Pediatric PH Research and Mentoring Fund, and this year they’ve started another online fundraiser, “Outpacing Pediatric PH for Mimi and friends.”

“Because this disease is progressive and without a cure, we are feeling like sometimes we outpace the disease when Mimi is feeling well, but when she is sick, we worry the disease is gaining ground.” 

World PH Day: Get Involved!

Join the global pulmonary hypertension (PH) community in showing the world the face of PH!
Share a photo of yourself with the World Pulmonary Hypertension Day logo and a message you want everyone to hear about the impact of PH on your life.

Continue to Vote for PHA

We need your help to win $5,000. Gold's Gym selected a local PHA volunteer's entry of Maroon 5's song "Harder to Breathe" to compete with other songs in a bracket-style competition for the best workout song. The song has just moved up in the competition one step closer to the prize -- a generous financial donation to PHA! If enough people vote for this song each week, we could raise $5,000 for vital PH services and resources.
Vote for "Harder to Breathe" by Maroon 5 and share:

Monday, March 25, 2013

Resources for Caregivers

Looking for tools to help you care for a loved one? See below for a wealth of resources to address the many issues you face as a PH caregiver, including caring for a chronically ill family member, coping as a family, financial and legal management, and finding time for yourself!

Sunday, March 24, 2013

Coping & Parenting with PH

If you have pulmonary hypertension and you are a parent, talking to your children about your illness may be one of the most challenging emotional issues you will face with this disease.

How and what you tell your child depends largely on both their age and ability to understand and cope with information. In addition, since how PH affects you will most likely change over time, what information you give your children may need to change over time as well.

Saturday, March 23, 2013

Volunteer for the Support Line

We are always collecting applications for interested volunteers. If you like talking on the phone, are currently unemployed and were diagnosed with PH before 2007, this could be your opportunity to get involved and help another PH patient!
Fill out the online form

Google Reader Will Discontinue July 1

If you subscribe to our blog via Google Reader -
read more on alternative subscription feeds


Vanderbilt Women's Soccer Team Raises Money on behalf of Teammates Sister

The Vanderbilt Commodore's women's soccer team has teamed up with PHA, raising money as they compete to win the Commodores Compete for a Cause: March Matters competition. Please donate to PHA through this link and support what they're doing for the PH community!

This year, we are raising money and awareness for the Pulmonary Hypertension Association as a part of the Commodores Compete for a Cause comeptition. This organization was chosen because Abby Carr, a current junior on the team, has a sister, Hannah, who has been battling Pulmonary Hypertension since age six. Thankfully, Hannah has surpassed her initial prognosis of only two years to live due to new advances in the medical field. There is much more research that needs to be done to continue to save lives like Hannah's and donations like yours are needed to make this possible!  Anchor down 'Dores!

Friday, March 22, 2013

Letters of Intent submission deadlines for PHA Research Program grant opportunities are approaching!

Letters of Intent submission deadlines for PHA Research Program grant opportunities are approaching! The Robyn Barst Pediatric PH Research and Mentoring Fund, the first grant established to support pediatric research in PH, will accept Letters of Intent until through May 10, 2013 U.S.-based clinicians holding an MD, DO, or equivalent degree are encouraged to apply for up to three awards of $25,000.

While two awards will be drawn from the million dollar endowment raised by the fund, an additional grant has been made possible due to a generous donation by PH caregiver, Ms. Betty Lou Wojciechowski. The Matthew and Michael Wojciechowski PH Pediatric Proof of Concept Grant will operate under Barst Fund criteria and rules of eligibility. The donation was made in honor of her two late sons, Matthew and Michael, who lost their battle to PH.

Additional PHA Research Program grant opportunities, the PHA Proof of Concept Grants and the PHA/ATS Research Fellowship Grants, will also be accepting letters of intent until May 10, 2013. Eligibility and application instructions for both programs can be found on the pages linked above.

Please spread the word about these innovative research opportunities to help bring us closer to a cure!


2013 Cities announced for PHA on the Road

PHA on the Road: PH Patients and Families Education Forums are heading to new areas this June – Denver, Colo. (June 1); Boston, Mass. (June 8); Durham, N.C. (June 15)  and San Francisco, Calif. (June 29). These FREE forums deliver much needed education on the diagnosis, treatment and management of PH, as well as on specific lifestyle and population issues.

Don’t miss the chance to join us for networking, educational sessions, exhibits and more. Registration for these educational forums is now open!

New PHA Online University Course: Caveolin-1 Expression in the Progression of Pulmonary Hypertension

Researchers are currently looking at the many chemicals naturally produced by our bodies to see which ones increase the expression of PH, which ones inhibit the expression of PH and which ones can indicate the onset of disease.  In this course Dr. Rajamma Mathew, a researcher at  New York Medical College presents her group’s current research into the role of Caveolin-1 in PH. Find out more about this course.

Thursday, March 21, 2013

Share your story for World PH Day

World Pulmonary Hypertension Day is May 5. One way you can get involved is by sharing your story with reporters. PHA has resources to help you put PH in news headlines and educate your community. #WorldPHDay, @WorldPHDay



PHA Telephone Support Group: March

PHA is hosting our monthly Patient Telephone Support Group. We are happy to bring patients together for a "meet and greet" conversation. We will also be giving national updates.To participate, you will need to dial into our toll-free 866 number. Internet is not required, but if you do use the Internet, you will be able you to follow along with slides that will be shown for a small portion of the call.

Register Today

Grey's Anatomy features patient with PH

On a recent episode of Grey's Anatomy Transplant Wasteland Season 9 | Episode 17 | Aired 03/14/13
a patient with pulmonary hypertension is featured as a character awaiting transplant.  Did you watch? What were your thoughts?

Wednesday, March 20, 2013

March Parent Telephone Support Group Thursday Night

Parents of PH Kids – are you struggling with making everyday activities “PH friendly” for your child? Join other parents Thursday night on our Parents Telephone Support Group!

A successful disability application from a PH patient

Applying for Social Security Disability (SSD) benefits can be a difficult and time consuming process. Luckily, a PH patient who successfully applied for SSD has offered up her application to help PH patients understand the disability process and the information needed to successfully apply. Check out the successful application here.

The sample application includes all parts of the disability application, including the medical and job worksheet, history of medical tests chart, medication chart, function report and work history report. The sample application includes helpful tips, such as creating your own medication chart to demonstrate the complex medication regimen many PH patients go through, as well as important advice for the SSD application process as a whole. For example, the sample application includes a summary of the patient’s in-person interview. During the interview, the interviewer incorrectly listed the patient’s name and date of initial disability. Thus, it is very important to read the summary of your interview and return corrections to the office where your interview was held. The sample application can help you draft a strong SSD application and help you avoid missteps throughout the application process.


AMA LEADER CALLS FOR UPDATE TO HIV-POSITIVE ORGANDONATION RULES The Senate HELP committee is marking up legislation today that would strike a ban on organ donations from HIV-positive donors to HIV-positive recipients and call for research on such donations. James Madara, CEO of the American Medical Association, wrote Tuesday to Sens. Barbara Boxer (D-Calif.) and Tom Coburn (R-Okla.) urging support for the bill, known as the HIV Organ Police Equity Act. Although many HIV-infected patients live long lives thanks to advances in treatment, they’re more susceptible to organ failure and an acute need for a transplant — a tall order when waits can sometimes last seven years, he wrote. “By updating the National Organ Transplant Act to reflect current medical and scientific understanding of HIV/AIDS, the HOPE Act would allow research on transplant donations from HIV-infected donors to HIV-infected recipients, and eventually, if proven safe and effective, would increase the availability of organs and access to transplantation for HIV-infected patients,” he wrote.
And here is another article from when the bill was firstintroduced.

Learn more about the PH & HIV connection ...


World PH Day: May 5

May 5 is World PH Day! Learn more about PH, explore events happening around the world, and find out how you can get involved at!

PH News around the World :

The Vienna Zoo Run will take place for the second time on 11 June 2013. The charity race supports the initiative “Curing pulmonary hypertension”.

Read More

World PH Day: Events Around the World

Curious to see what the PH community around the world is doing for World PH Day? Explore the interactive map at Click on a region to discover events in that area!

Tuesday, March 19, 2013

Caregiver Call Wednesday

Caregivers – do you find yourself having to explain PH to people everywhere you go? Join us for a webinar TOMORROW on advocating for your loved one and yourself in everyday situations.
As a caregiver, you may find yourself in the position of advocating for your loved one in many everyday situations - at the supermarket, the doctor's office, with friends, and more. This webinar will discuss how to approach these situations, how to best support your loved one in advocating for themselves when appropriate, and what to do when you just can’t get the message through.
Hosted by Allyson Rupp, LCSW, is the licensed clinical social worker for the adult PH service at Stanford hospital and clinics in Northern California. She supports patients and families through the diagnosis and education of PH and its treatments, finds resources to assist patients through crisis, and focuses on developing the tools and resources to adjust to a PH diagnosis. She facilitates the monthly PH support group for patients and their support persons as well as PHA's monthly Caregivers Telephone Support Group, and has been actively involved in presenting and leading support groups for the PHA’s conferences for several years.
Learn more and register!

Woodlands CrawPHish Festival

It’s time for a day of music, fun, fixin's and PH awareness. Join us at The WoodlandsCrawPHish Festival on Saturday, March 23 in Town Green Park. Hope to see you there!


Budding Scientist Makes Strides in PAH Research, Finds Important Role for Beta-Catenin Molecule

High school student Jack Takahashi of Saratoga, Calif., was a finalist in the Intel Science Talent Search for discovering the critical role a specific molecule plays in the development of pulmonary arterial hypertension (PAH). “This project allowed me to approach a medical problem, a lung disease, by looking on a cellular level, because it’s caused by cells not behaving the way they’re supposed to,” Jack says.

In PAH patients, cells grow abnormally in the blood vessels of the lungs. In just one year, Jack found that beta-catenin molecules, which help to regulate this process, were in high concentrations in these abnormal cells. He feels that further research on the beta-catenin molecule could lead to the development of new drugs to treat PAH. Jack worked with Vinicio A. de Jesus Perez, MD, assistant professor in medicine and PAH researcher at Stanford University, to identify a problem for the competition.

A student at Lynbrook High School in San Jose, Calif., Jack was selected as one of 40 finalists from across the country who convened in Washington, D.C., this month to present their work to the public, meet scientists, and be judged for top cash prizes in the Intel Science Talent Search, considered one of the most prestigious high school science competitions in the nation. While he was not one of the top 10 finalists, he was awarded the 2013 Intel medal for outstanding contribution to science.
In this video, Jack Takahashi talks about the competition and the importance of medical research:

Monday, March 18, 2013

Breathing Your Way to Calm

Develop your personal toolkit for coping with stressful situations. Join Dr. Rana Awdish for a presentation on using breathing techniques and meditation as a means of stress relief on Monday, March 25 at 2pm EST.

Dr. Rana Lee Adawi Awdish is currently a Pulmonary Hypertension specialist and practicing physician at Henry Ford Health System in Detroit. Prior to coming to Henry Ford, Dr. Awdish completed her training at Beth Israel in Manhattan. She attended Wayne State University Medical School, and completed her undergraduate degree at the University of Michigan in Ann Arbor. She is currently triple board-certified in Internal Medicine, Pulmonary and Critical Care Medicine. She has studied the health benefits of Yoga Practice, specifically Core Strength Vinyasa Yoga, since 2002.

PHA Email Mentors

PH Email Mentors are patients and caregivers from all over the world, standing by to help patients, caregivers and parents through one-on-one, email-based support.
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.
Learn more about these Mentors by reading their Spotlight interviews!

Get in on the action!

Support all the ways PHA fights this DASTARDLY DISEASE by starting a personal PHundraising page today – make sure to tell all your friends and family how important our cause it and ask for their support!

Saturday, March 16, 2013

Coping as a Long-Term Survivor

Coping with pulmonary hypertension over the long term is like riding a wave of ever-changing emotions. At times, you may feel active and engaged; other times, you may find it hard to get out of bed. The challenges of life everyone faces, such as maintaining a career, nurturing healthy relationships and managing personal finances, become more difficult when you have PH. Meeting the physical limitations and emotional stress of PH day after day, year after year can also be an extraordinary challenge.

Meet the PHA Support Line Volunteers

Our Support Line is staffed by friendly long-term patient survivors. They are here to answer your PH questions, lend a sympathetic ear or help you solve problems or issues relating to living with PH.

Call the Support Line to:
 1.Talk to another patient right away
 2.Ask questions and get tips about living with PH
 3.Find a local doctor
 5.Find a local support group
 6.Get feedback from a long-term survivor
 7.Learn more about PHA
 8.Learn how you can get involved with PHA
 Call 911 for emergencies, and for anything else, call on us!

Friday, March 15, 2013

Support Groups and Associated Conditions

Knowledge, support, hope and empowerment: just a few of the things a PHA support group can offer PH patients. No one should face this disease alone.
  •  Knowledge: Medical information delivered by PH experts and medical professionals
  •  Support: Coping skills shared by other patients and you
  •  Hope: An opportunity to interact and meet patients who have been managing their PH for one, five, 10... even 20 years or longer
  •  Empowerment: A way to get involved, give back and say you can be part of the solution when we find a cure one day!
More and more, patients are taking part in our support group network. There are more than 240 support groups and at least one new group is added each month. You are not alone and there's a good chance there's a group meeting near you.

Help PHA win $5000

Want to help the Pulmonary Hypertension Association win $5,000? Visit Gold's Gym, login with Facebook, vote for "Harder to Breathe" by Maroon 5 (it's option 11 of 32). Vote every Monday!

Thursday, March 14, 2013

Parents Telephone Support Group

Parents of PH Kids – are you struggling with making everyday activities “PH friendly” for your child?
 Join other parents next week on our Parents Telephone Support Group! Details at

Faces of PH

Faces of PH: “I can't easily explain this to strangers…. The disease itself keeps me from being able to bend over, run, go upstairs quickly, or even walk some days. Who knew your heart and lungs were so important?

Wednesday, March 13, 2013

Diagnosing Pulmonary Hypertension

Pulmonary hypertension (PH) can be difficult to diagnose in a routine medical exam because the most common symptoms of PH, such as breathlessness, fatigue and dizziness, are also associated with many other conditions. If your doctor suspects that you have PH, he or she will want to review your medical and family history, perform a physical exam and perform one or more diagnostic tests.

Preliminary Tests
To determine if you have PH, your medical team will schedule specialized tests. If your medical team suspects PH as a result of one or more of the following tests, they will go on to schedule a right-heart catheterization, which is required to confirm diagnosis.

Learn more about Diagnosis and Diagnostic Testing


PHA is exploring the possibility of adding a second time option for our monthly Parents Telephone Support Group. Your input would be greatly appreciated!

This survey will be open until Sunday, 3/17/13. Thank you for your feedback!

PHA’s 2013 PH Professional Network Symposium – Request an Abstract Mentor

Want to highlight research conducted at your institution? Consider submitting your research abstract for presentation at the 2013 PH Professional Network (PHPN) Symposium Poster Hall! The PHPN Symposium Committee welcomes submissions from those with and without previous abstract writing experience. Mentors are available upon request to assist all PHPN members in preparing their abstracts.
PHA's 2013 PHPN Symposium will be held September 26-28, 2013 in Arlington, Va. Healthcare professionals in all areas of practice related to pulmonary hypertension are invited to submit abstracts. Authors may request a mentor from the committee by contacting; a topic and a draft or detailed outline should be prepared at the time of the request. Authors can also view the abstract web page to find a webinar recording, guidelines, sample abstracts and other helpful resources.
Deadline to Request a Mentor: April 1, 2013
Submission Deadline: May 15, 2013

Please contact if you have any questions.

Getting in the Headlines

Working with the media to highlight your special event or upcoming support group meeting doesn't have to be scary. Whether you've tried working with reporters or not, PHA has tips to help you get your story in news headlines.


Tuesday, March 12, 2013

The Fifth World Symposium on PH


Feb. 28 was Global Rare Disease Day. "On that day, I was struck by where I was and who I was with. PH may be rare but it is not forgotten.... "
Read More as Rino (PHA's President) blogs about his experience at The Fifth World Symposium on PH.

PHA Store Has a New Look!

Download free resource materials instantly on the newly revamped PHA Store, your one-stop shop for PHA apparel, keychains, greeting cards, members-only discounts and more.

Pulmonary Hypertension Highly Prevalent in Hemodialysis Patients

Pulmonary arterial hypertension (PAH) is a frequent cardiac complication among patients with end-stage renal disease (ESRD), especially among those on hemodialysis, according to Iranian researchers. Read the article ...

Monday, March 11, 2013

Caregivers: Everyday Advoacy

Caregivers – do you find yourself having to explain PH to people everywhere you go? Join us for a webinar on advocating for your loved one and yourself in everyday situations.

Be a PH Superhero: Share Your Story!

Each time you share your story with your Members of Congress and reporters in your area, you're flexing your PH awareness-raising muscle! PHA, your trusty sidekick, is here to help you get started.

Contact Elisabeth at to learn more!

PHA is proud to announce that the Robyn Barst Pediatric PH Research and Mentoring Fund

PHA is proud to announce that the Robyn Barst Pediatric PH Research and Mentoring Fund, the first fund established to support pediatric research in PH, is officially accepting Letters of Intent until April 10, 2013. U.S.-based clinicians holding an MD, DO, or equivalent degree are encouraged to apply for this unique granting opportunity. Full award information can be found on the Request for Application.

While PH treatment options have multiplied in the past decades, pediatric PH diagnosis and management remains limited with no FDA-approved treatments for children. Robyn Barst, MD, a pioneer in the development of PH research, has sparked an effort to change this. The Barst Fund aims to develop the field by offering award recipients support for pediatric PH research projects, and engaging them in mentorship opportunities that provide in-person training from pediatric PH experts.

In 2013, up to three awards of $25,000 will be offered. One award made through the Barst Fund is made possible through a generous donation to PHA from Ms. Betty Lou Wojciehowski in honor of her two late sons, Matthew and Michael, who lost their battle to PH as children. Their memory and fight continue through the research funded through this award.

Saturday, March 9, 2013

Survival Guide as an e-Book?

That's right — PHA is taking another step into the digital age and is considering offering the next update of Pulmonary Hypertension: A Patient's Survival Guide as an e-book. The Survival Guide will still be available as a hard copy, but could give you more ways to take in this valuable resource. To best serve your needs, we'd like to get your feedback in this short survey.
 Tell us what you think

Friday, March 8, 2013

How Would You Prepare Yourself & Others for PH Emergencies

You know PH is a rare disease that requires specialized medical care. However, many local hospitals, physicians, nurses and emergency medical technicians (EMTs) may not fully understand your condition. Being educated and prepared will grant you peace of mind to worry less and live more.

Emergency situations are just one of the many topics covered in The Newly Diagnosed Self-Study: PH Ready, a series of e-courses that serve as a roadmap for newly diagnosed PH patients.

Teen Social Network

Do you know a teen ages 13-18 living with PH? Let them know about our private teen social network!

Online Awareness & Fundraising

How can you raise awareness and funds without even leaving the house? With an personal fundraising page! Share your PH story on a personal fundraising page and ask your family and friends to join you in your fight against PH! Get started now!

Thursday, March 7, 2013

Medicare Part D Chart

Do you have Medicare? Do you know when the Part D “donut hole” will affect you? Take a look at the updated, easy-to-read Medicare Part D chart.


Did you know we have pages on our website in Spanish?

Did you know that we have pages on our website in Spanish? Visit PHA to learn more about PH, how to manage your PH, and the social resources that PHA has in Spanish.

PH Question

Before you received your PH diagnosis, did a physician ever tell you your PH symptoms were solely due to anxiety?

Wednesday, March 6, 2013

PHA Ranked Four-Star Charity for 10th Year in a Row

Charity Navigator, the leading charity evaluator in the United States, awarded the Pulmonary Hypertension Association four out of four stars for the 10th consecutive year. PHA reached its highest score yet, 69.03 out of 70, which puts the organization among the top 1 percent of charities for sound fiscal management and commitment to accountability and transparency.
  Read more