Monday, March 31, 2014

Bayer Begins Riociguat Trial for Resistant PAH

healio - Bayer HealthCare announced enrollment of the first participant in the phase 3b RESPITE study. The open-label, multicenter, international pilot study will assess the soluble guanylate cyclase stimulator riociguat (Adempas) in patients with pulmonary arterial hypertension who are resistant to treatment with phosphodiesterase-5 (PDE5) inhibitors.



Read article

What PH Symptoms Most Impact You?

On Tuesday, May 13, PAH patients and the parents of young patients have the chance to tell the U.S. Food and Drug Administration what symptoms most impact them and what they would most like a PAH treatment to do. Join PHA for this once-in-a-lifetime opportunity to speak directly to FDA drug reviewers.
  1. Participate in person or via live webcast 
  2. Hop on a PHA Bus from New York, Philadelphia or Maryland

Sunday, March 30, 2014

Are You a Young Adult with PH?



Joining up with PHA is important because we have many ways for patients to connect and stay informed. The mission of Generation Hope is to connect young adults with pulmonary hypertension with each other and provide a safe and positive place to find support, inspiration and information. This is accomplished through the use of email groups and social networking and through the collective support of patient-led advocacy, awareness and fundraising initiatives.


Saturday, March 29, 2014

Download PH Anthem Song "Be Brave" Today!

Help us get "Be Brave" on the top 10 of iTunes today! PHer Chloe Temtchine wrote the song as an anthem for those living with pulmonary hypertension and half the proceeds will go to PHA. Download the song today and spread the word to everyone you know!

Learn more

Friday, March 28, 2014

Question of the Week: Being Brave

Tomorrow Chloe Temtchine’s song “Be Brave” will be released. What does it mean to you to be brave? Share your thoughts below in the comments and don't forget to download the song from iTunes tomorrow then spread the word to everyone you know. Half the proceeds will go to PHA.

Prepare for Your IEP/504 School Meetings



For many families, Spring means IEP/504 meetings to prepare for next school year. Get set with our School Resource Guide.

Thursday, March 27, 2014

La Importancia del Ejercicio e Hipertensión Pulmonar

El ejercicio a veces puede aumentar la distancia al caminar en pacientes con hipertensión pulmonar. Habla con tu médico sobre las actividades físicas adecuadas para ti. Aprende más por el sitio web de PHA. La Conferencia 2014 de PHA también incluirá una sesión dirigida por expertos médicos sobre la nutrición y el ejercicio. ¡Nos vemos allá!

Walk for Team PHenomenal Hope!

This June, Team PHenomenal Hope will compete in one of the most grueling bike races in the world — Race Across America. They will ride more than 3,000 miles in nine days with the goal of honoring pulmonary hypertension patients and raising critical funds in the fight against PH.

YOU can get involved in their journey right where you live. PHA is inviting the PH community to a nationwide day of action in solidarity with Team PHenomenal Hope on Saturday, April 12. Wherever you live, whatever your capacity, commit to walking with us. Remember, even though this is less than a month away there is still time to register!

You can also sponsor a mile on the Race of Our Lives map, and you will be entered into a raffle to win an UP wristband from Jawbone. The UP wristband is an activity tracker that can help you achieve your personal fitness goals.

Visit our virtual fundraising page to sponsor a mile or learn how YOU can get involved on Saturday, April 12 by registering for free.

Wednesday, March 26, 2014

Take Action for Respiratory Therapy

Take action to improve patient access to respiratory therapy. Send an email to your Members of Congress during American Association of Respiratory Care’s virtual lobby week this week. On April 1, PHA will join respiratory therapists from across the country in meetings with Members of Congress.

Support respiratory therapy

Insurance Issues Getting You Down?

We have the resources for you. Our online Insurance Guide includes tips for choosing your insurance, knowing your rights, writing appeals and obtaining financial assistance.

Visit our Insurance Guide

Raise Awareness this World PH Day

Sharing your story with PH in the media can be a great way to educate others about this disease. What better time to do so than World PH Day this May 5? For tips on creating your pitch and sharing information with reporters, visit the World PH Day website.

Tuesday, March 25, 2014

Michael McAdams Honors His Wife and Son

"I don't know how I would cope without them or anyone around. I'm not always one for words, but I just wanted to make sure I let them know how I feel." - Michael, PH Patient

Want to express gratitude to your caregiver? Submit a Caregiver Shout-Out!

Video Sneak Peek at Indianapolis from the Conference Blog

We recently visited Indianapolis in preparation of our 2014 International PH Conference this June 20-22, 2014.

Check out this video blog entry from Indianapolis showcasing the Conference hotel, local attractions and more!

Monday, March 24, 2014

PHA Program Highlight: Support Groups

When PHA was formed, one of the main goals of our founders was to end the isolation pulmonary hypertension patients and caregivers often face because of this diagnosis. PHA is proud to continue that work by helping community members across the country lead support groups for patients and caregivers in their local areas. Today, PHA is proud to have over 245 support groups providing in person support, resources and education to patients and caregivers every day.

As amazing as that number is, we know there are still many patients and caregivers who live too far from a support group to attend regularly. At PHA, we work hard to not only support our existing groups and make sure they have the best resources around, but also to set up more groups so more people will have access to this important support.

You can help support that mission today, with a donation to PHA. Your gift will help PHA not only provide the best resources to support group leaders but also help us start more support groups that can reach more patients and caregivers.

Help us continue to bring people together through support groups with a donation today.

Saturday, March 22, 2014

Faces of PH: Lismari Muñoz Cuadrado

“My name is Lismarí Muñoz Cuadrado. I am a 19-year-old from Puerto Rico who was diagnosed with idiopathic pulmonary arterial hypertension at age 17. I’m continuing with my appointments and my studies, and today I’m living a happy, optimistic, and mentally stable life for the glory of God.”

Read Lismari's story

Friday, March 21, 2014

Question of the Week: Sharing with the FDA

Question of the Week: What story are you going to share with the FDA on May 13? Let us know in the comments below then learn more about the FDA meeting that you can participate in remotely or in person.

This is Not Your Ordinary Day

"This is not your ordinary day. But, what I have learned changed my life," says Chloe Temtchine. Chloe is a singer/songwriter with PH, and her new song "Be Brave" will be available on iTunes on March 29. Half the proceeds will go to PHA so mark your calendar and spread the word!

Watch this video below or on YouTube.

Thursday, March 20, 2014

What Do You Want to Talk About?

Join Carol next week as she facilitates our Monthly Patient Telephone Support Call. Last month we touched on issues of coping and lifestyle modifications to help conserve energy. What do you want to chat about this month?

Register

World PH Day is May 5!

What are you doing this May 5 for World PH Day? Many of us will spend the months leading up to May 5 pitching PH-related stories in the media and raising awareness in our communities and online. Visit www.WorldPHDay.org to see examples. This April 29, PHA will host its popular annual webinar by Dr. Michael McGoon of Mayo Clinic about new treatments in PH to celebrate World PH Day. We hope to see you there!

UP Activity Tracker Wristband Contest

Get your name on the map! Sponsor a mile on the Race of Our Lives map from April 5 - 19 and you will be entered into a raffle to win an UP wristband from Jawbone. The UP wristband is an activity tracker that can help you achieve your personal fitness goals.

Every mile sponsored during that time-frame will earn you one entry into the raffle. The more miles you sponsor, the more entries you receive! How cool is that?

Sponsor miles to enter

Wednesday, March 19, 2014

Preparing for School

Many families are already preparing their child’s school for next year – scheduling meetings, arranging accommodations and explaining pulmonary hypertension to teachers and staff.

A little education and communication can go a long way.

Reserve Your Spot for the Bank of America Chicago Marathon

PHA Midwest Chapter is excited to be an Affiliate Charity for the 2014 Bank of America Chicago Marathon Charity Program! Avoid the wait of the lottery, reserve your guaranteed spot on Team O2 breathe NOW on Oct. 12!

To join Team O2 breathe, there is a $75 registration fee and a $1,000 fundraising commitment.

Team O2 breathe membership includes:
  • Entry with charity bib for Bank of America Chicago Marathon
  • Charity corral on marathon day
  • Pre-race pasta party for runners, family and friends
  • PHA Team O2 breathe Tech shirt
  • Marathon training program (online)
  • Fundraising incentives ($250, $500 & $1,250)
  • Personal homepage for online fundraising
  • Online fundraising tools

Email Colleen Ryan to guarantee your spot by April 6 at ColleenRyan@PHAssociation.org.

April 2, Educate Congress With a Few Simple Phone Calls!

“Never doubt how important your voices are. We need to hear from you and our bosses need to hear about what is important to you. In fact, some Members won’t sign onto a bill until they’ve heard from someone in their state or district. They want to know that the bill is something important to their constituents.”  
-- Sara Mabry, Legislative Aide to Senator Robert Casey (D-PA), explains the importance of reaching out to your Members of Congress and the power of your voice.


If you or someone you know suffers from pulmonary hypertension, then you have a powerful story to tell. Share it on April 2, PHA’s National Call-In Day.

National Call-In Day is your chance to urge your Members of Congress to co-sponsor the Pulmonary Hypertension Research and Diagnosis Act (H.R. 2073; S. 1453). The bill seeks to:

Increase PH research
Increase early and accurate diagnosis
Give those with PH longer, better lives

This bill needs more co-sponsors in order to move through the legislative process and become law. That means, Congress needs to hear from you about how important the PH Research and Diagnosis Act is to the PH community. This is your chance to speak up and be heard. It’s as easy as 1, 2, 3! Here’s how:

1. Take the pledge! Visit PHA's website and pledge to make your calls. A week before the National Call-In Day, PHA will email you instructions and a script to make your calls on April 2 easy.

2. Spread the word! Ask your friends, family and neighbors to take the pledge at or join our event on Facebook.

3. Make your calls! On April 2, make the calls! Use the script provided by PHA to ensure that your phone calls go smoothly.

Questions? Contact Elisabeth Williams at Advocacy@PHAssociation.org or 301-565-3004 x753.

Tuesday, March 18, 2014

News: Yale Study Offers Insight Into Function of Cells Linked to PH

Science Codex - Most of us draw roughly 25,000 breaths a day without any thought. But for patients with pulmonary hypertension, a life-threatening increase in blood pressure in the lungs, even the smallest task can leave them gasping for air. A new study by researchers at Yale School of Medicine offers insight into the function of cells linked to this incurable and often fatal illness.

Read article

A PAH Talk Show … That Needs You!

The Food and Drug Administration has approved twelve drugs for PAH, but those drugs aren’t perfect. Tell FDA that there is more work to be done.

On May 13, in White Oak, Maryland, FDA will host an informal, “talk show” style meeting where PAH patients can share what it’s really like to live with pulmonary arterial hypertension. As with any talk show, you’re most likely to get to tell your story if you attend in person, but if you can’t make the trip webcast participation with online voting is available.

For those attending in person, PHA is organizing buses from Maryland, New York and Philadelphia.

Take these two steps to RSVP:
  1. Register with FDA. Whether you are attending in person or by webcast, you must register on FDA’s website. All members of the PH community are welcome, but PAH patients and the parents of young patients will do the talking.
  2. Claim your seat on the bus. For those who would prefer not to drive to the FDA campus, buses are available from pick up points in New York, Philadelphia and Maryland. Complete this form to claim your seat on the bus

Hot Holders for Hope Reach Thousands

Bonnie Patricelli and her son Ryan Juntti are raising awareness with their project “Hot Holders for Hope.” They printed and distributed 50,000 hot beverage cup sleeves to coffee shops in areas such as college campuses, train stations, airports, major city centers and tourist attractions. The sleeves carry a message about pulmonary hypertension awareness and send people to the PHA website to learn more.

Bonnie and Ryan’s research in applying for this Lantos Grant project found that the average consumer of a hot drink spends 45 minutes with the drink and that the message on the sleeve is viewed by approximately six other people who are sitting, chatting or passing by.

Fund your idea. Lantos Grant applications are due April 15 so apply today!

Saturday, March 15, 2014

Meet PH Email Mentor Neeta


Did you know that our PH Email Mentor Neeta speaks four languages: English, Hindi, Konkani, Kannada! She is one of our 32 PH Email Mentors and she is available by email to chat with you and give tips on getting your medical records organized. She is also available just to email if you’d like a friendly face to connect with!



Thursday, March 13, 2014

Sometimes it's Pulmonary Hypertension

Please share this with your friends and family and online social networks to spread the word about PH and the need for early diagnosis:

Have you been diagnosed with asthma, but find that treatment isn't working? It could be pulmonary hypertension. While symptoms are similar in both diseases, PH is a rare, serious illness often mistaken for asthma. Learn more at www.SometimesItsPH.org.

Do you live in Louisiana, New Jersey, Utah or Maine? If so – walk with us on April 12 for the PHenomenal Mile!

So far, 30 states plus Puerto Rico, and 68 different groups, are represented on our PHenomenal Mile Meet-up map. Make sure that YOUR state is represented and help us get all 50 states on the map!

States that have already signed up to walk with us include:
•    Arizona
•    Arkansas
•    California
•    Colorado
•    Delaware
•    Florida
•    Georgia
•    Hawaii
•    Illinois
•    Indiana
•    Iowa
•    Kansas
•    Kentucky
•    Maryland
•    Michigan
•    Minnesota
•    Mississippi
•    Nebraska
•    New York
•    North Carolina
•    Ohio
•    Oklahoma
•    Oregon
•    Pennsylvania
•    South Carolina
•    Tennessee
•    Texas
•    Vermont
•    Virginia
•    Washington
•    Puerto Rico

Wednesday, March 12, 2014

Improved Right Heart Imaging Approved by FDA

The Food and Drug Administration (FDA) has approved a device called the VMS™ heart analysis system which can be used in echocardiography allowing your physician to better measure right heart volumes and function.

e-Learning Guides Bring Information Together in One Place

Are you looking to gain more knowledge about pulmonary hypertension? Well we have the perfect solution for your learning needs. With PHA Classroom’s e-Learning Guides you can access information on living with PH, anyplace and anytime! The e-learning guides cover a variety of topics, from traveling with PH to relationships. The e-learning guides bring together recordings and other useful PHA resources to keep you informed. You can simply choose from any topic of interest and start learning today.

Start learning

Living with PH and Lupus

PHA has just launched a resource page for patients living with PH and Lupus. Learn more about treatments, testing and what to ask your doctor.
Anna Bower, PH patient who has lupus and
scleroderma with her three nieces. 

Tuesday, March 11, 2014

Webinar with Experts in the Field

Join us for this unique opportunity to hear from a panel of experts considered to be among the founders of the modern PH field. This interactive discussion on the history of pulmonary hypertension is second in a two-part series and will focus on the progress in clinical management of PH. Dr. Stephen Mathai from Johns Hopkins University will interview our panelists:
  • David Badesch, MD, University of Colorado, Denver
  • Michael McGoon, MD, Mayo Clinic
  • Stuart Rich, MD, University of Chicago
Register now | View the recording of the first webinar

Congratulations, Dr. Hap Farber!

Yesterday, Dr. Hap Farber of Boston University skied a total of 101,376 vertical feet – all to raise funds for pulmonary hypertension research and patient programs. Dr. Farber completed his challenge in a little more than 8 hours, even enduring a significant drop in temperature by the end of the day. Having surpassed his goal of skiing 100,000 vertical feet, his ski challenge was definitely a success!

Currently, Dr. Farber’s virtual fundraising page has raised more than $3,600 and continues to climb. You can still support Dr. Farber’s efforts by donating in honor of his challenge.

Only 100 Days Until our 2014 Conference!

Our 2014 International PH Conference and Scientific Sessions is only 100 DAYS away!

Planning to join us in Indianapolis? Register today at the early-bird rate and reserve your spot! Don’t miss the chance to experience the unique networking and educational opportunities that Conference has to offer.

Register now

Monday, March 10, 2014

PH and Associated Conditions Resources

Are you living with PH and an associated condition? We have a Facebook group: PH Plus: Pulmonary Hypertension and Associated Conditions to help facilitate connecting with others.  Join the conversation today and learn more about the resources PHA provides.

Sunday, March 9, 2014

Tom Lantos Grant Available Internationally

Did you know that the Tom Lantos Grant is available to people involved in PH anywhere in the world? Check out these projects from 2012 from India to South Korea, and apply today! Deadline is April 15.

Saturday, March 8, 2014

Faces of PH: Christopher Anderson

"Dr. Yagan sat down beside me on the bed, put his arm around me and said to me, 'Chris, I can't cure you of this disease but if you will work with me and allow me to treat you, I will absolutely improve the quality of your life."

Read more as Christopher Anderson shares his story of living with PH

Friday, March 7, 2014

Give Yourself Space to Feel and Respond to Your Diagnosis

Every new patient, when learning that they have PH, responds differently. You may feel angry, frightened, lonely, frustrated, worried, numb, or some combination of these feelings. It’s important to remember that there are no right or wrong reactions. Give yourself the space to feel and respond to your diagnosis without judgment so you can begin to move forward. PHA has resources to help you cope when you are newly diagnosed.

View guide for coping as a newly diagnosed patient

Question of the Week: Informed Patient

Question of the Week: What does it take to be an informed patient with a rare and difficult to diagnose disease like pulmonary hypertension? Answer in the comments below.

Cold Weather and Staying Healthy

It feels like we are in the center of a winter wonderland, and reality is winter months bring special considerations for pulmonary hypertension patients. With record low temperatures and flu season upon us, you’ll need to pay extra attention to your health.
Here are a few tips to follow to stay warm this winter:
  • While indoors, you can avoid many of the effects of cold weather, but remember that the dry indoor air may irritate your lungs. Also, cold and flu season can affect you anywhere and at any time. Read our Helpful Hints on staying healthy during cold and flu season
  • If you do go outside, try to limit your time and keep optional excursions to a minimum. Cold air can take your breath away; always wear a mask or a long, warm scarf to protect your face and warm the air around your mouth.
  • Oxygen users should keep an extra cannula with them.
  • Avoid strenuous activity such as shoveling snow. Ask neighbors to help clear your walks.
  • Prevent hypothermia and chills by wearing multiple layers and a warm hat.

Additional tips and resources to stay healthy in the cold

Thursday, March 6, 2014

e-Learning Guides, a New Way to Learn

Check out PHA Classroom’s e-Learning Guides to access information about a pulmonary hypertension topic all in one place. The e-learning guides allow you to access information from anyplace! With a combination of recordings and other PHA resources, you can get helpful tips from your phone, laptop or tablet.

Check out the e-learning guides

Mark Your Calendars: National Call-In Day April 2

If you or someone you know suffers from pulmonary hypertension, then you have a powerful story to tell. Share yours on April 2, PHA’s National Call-In Day. Tell your Members of Congress about the need for more PH research and urge them to co-sponsor legislation that will improve diagnosis and raise public awareness about PH.

This is your chance to speak up and be heard. It’s as easy as 1, 2, 3! Here’s how:
  1. “Join” PHA's Facebook event or ask to be put on PHA's National Call-In Day Pledge List on our website to let us know you’ll be calling your Members of Congress on April 2.
  2. Invite your friends, family and neighbors to call and advocate for the PH community.
  3. Check back for a sample call script and information on how to find your Members of Congress the week leading up to the National Call-In Day.
  4. Make the calls on April 2!
Worried you might forget? If you “join” the Facebook event, PHA will send you a Facebook reminder about the National Call-In Day the week before April 2. If you join the Pledge List we will send you an email reminder.

Dr. Hap Farber 100,000 Feet in One Day Ski Challenge

Join Dr. Hap Farber in partnership with the Pulmonary Hypertension Association and Team PHenomenal Hope as he takes on the challenge to ski 100,000 vertical feet in one day (ONE DAY!) in March to honor PH patients, increase awareness of PH and raise critical funds in the fight against the disease. Help support Dr. Farber’s challenge by sponsoring by the foot, the run or make a general donation to his online fundraising page.

Support Dr. Hap Farber

Meet Anna Volino and What It Means to Her to Be Brave


"I didn't expect an 11-year-old to blow by mind. But, she definitely did. Meet my friend, Anna Volino," says Chloe Temtchine. Chloe is a singer/songwriter with pulmonary hypertension, and her new song "Be Brave" will be available on iTunes on March 29. Half of the proceeds will be donated to the Pulmonary Hypertension Association.

Watch this video below or on YouTube.

Wednesday, March 5, 2014

Impact Specialty Pharmacy Services

The Pulmonary Hypertension Association/Caring Voice Coalition Specialty Pharmacy Advisory Board has created a powerful tool that can impact the service your specialty pharmacy provides. Help us identify trends and best practices in the specialty pharmacy field by providing feedback on our form about your experience with your specialty pharmacy. Thank them for a job well done or make suggestions for improvements.

Submit a comment

PHA Team Climbs 31 Flights of Stairs

Team PHA took “flight” at the Fight for Air Climb on Sunday, Feb. 9 at Oakbrook Terrace Tower in Oakbrook, Ill. They showed their support while climbing 31 flights of stairs!


Rosanne Huber was the Team PHA Captain and organizer for the Fight for Air Climb. She formed a team of friends and family to participate on behalf of PHA. Rosanne was able to utilize her Lantos Grant to obtain an information booth for PHA Midwest Chapter. While spreading awareness, Team PHA climbed to the top and came in 6th place overall!

Along with the Feb. 9 event, this opportunity has allowed our Midwest Chapter to secure a booth at the 2014 Healthy Lung Expo on May 2, in Oakbrook, Ill.

Do You Have an Idea That Could Go Viral?

Get it funded through a Lantos Grant. As many as 10 awards of up to $5,000 each will be awarded in 2014.

Apply online by Tuesday, April 15, 2014.

If you have questions, or you'd like to brainstorm your project, please contact LantosGrants@PHAssociation.org. To get some ideas, read stories from previous projects: Colleen Brunetti email groups video | Steve Van Wormer PSAs

This program is supported by an unrestricted educational grant from Gilead Sciences.

Tuesday, March 4, 2014

Meet the Barst Pediatric Research Fund Awardees

In 2012, PHA established the Robyn J. Barst Pediatric PH Research and Mentoring Fund in memory of Dr. Barst, a pioneer in the field of pediatric pulmonary hypertension research and treatment.

On May 27, 2014, the 2014 grantees, Dr. Mehdi Fini and Dr. Melanie Nies, will discuss their research and the potential applications for pediatric PH treatments in this live webinar.

Dr. Mehdi Fini has been awarded the Cordelia's Pediatric Mentoring and Research Grant through the Barst Fund.

Dr. Melanie Nies has been awarded the Matthew and Michael Wojciechowski Pulmonary Hypertension Pediatric Proof-of-Concept Grant through the Barst Fund.

Register now for the webinar! 

Want to learn about the Barst Fund Awardees early? Read their interview on PH Kids | Read more information on the Barst Fund

What Do You Want from New PAH Drugs?

The Food and Drug Administration is making changes in how they approve drugs. For the first time ever, they are asking, “What do patients want from new drugs?”

Hundreds of disease communities have asked for a chance to answer that question. PAH is one of only sixteen diseases selected by the FDA for this discussion. Please help us make a better tomorrow for PAH patients by attending in person or listening  in and submitting comments via webcast on May 13.

Take these two steps to RSVP for this exciting opportunity:
  1. Register with the FDA. Whether you are attending in person or by webcast, you must register on FDA’s website. All members of the PH community are welcome, but PAH patients and parents of young patients will do the talking.
  2. Claim your seat on the bus. For those who would prefer not to drive to the FDA campus, buses are available from Maryland, New York and Philadelphia. Complete this form to claim your seat on the bus.

Sunday, March 2, 2014

Staying Connected

Extra, Extra! Read all about it! Get the latest news and alerts about pulmonary hypertension sent right to your Inbox! By subscribing to our biweekly e-newsletter PHANews or any of our email list topics of interest, you can stay connected with what’s going on in the PH community. You have the option to subscribe to different email alerts and blogs and still enjoy information from home or on the go!

Sign up today

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