Wednesday, April 30, 2014

For Medical Professionals: ENTELLIGENCE Award Ceremony

The ENTELLIGENCE™ Steering Committee and Actelion Pharmaceuticals US, Inc. cordially invite physicians and researchers to attend the 2014 Young Investigator Program Award Ceremony to be held on May 19 in San Diego, Calif., during the annual American Thoracic Society (ATS) meeting.

Learn more about this event

Educational Event in San Diego

PHA invites you to the American Thoracic Society's (ATS) 8th Annual Free Patient Forum. PHA is partnering with the Public Advisory Roundtable of ATS, an international scientific society focused on respiratory and critical care medicine, to provide this unique opportunity for pulmonary hypertension patients. On Saturday May 17, 2014 in San Diego, Calif., PH experts will gather with patients to discuss the latest in research, clinical trials and clinical care in the field. The event will be held in conjunction with the ATS International Conference.

Featuring PH Experts:
  • Wendy Hill, MSN, RN, NP-C, VA Greater Los Angeles Healthcare System/ UCLA
  • Nick Kim, MD, University of California, San Diego School of Medicine
  • Ronald Oudiz, MD, Harbor-UCLA Medical Center, Torrance
  • Jeffrey Sager, MD, MSc, Cottage Pulmonary Hypertension Center, Santa Barbara
RSVP for this free event by April 30

For more information, contact ATS2014-RSVP@PHAssociation.org.

Today is the Last Day to Get Your Name on the Map!

Team PHenomenal Hope will be cycling 3,000 miles nonstop across the United States this June. Support the team and help find a cure for pulmonary hypertension! Donate $15 on our virtual map today to become a sponsor of one mile. If you donate by today, you will also get your name added to our map that will be at PHA’s International PH Conference in Indiana this June. Every dollar donated supports vital programs and services for PH patients and their families.

All miles in the East Coast have been sponsored. Please select the Pacific Coast, West or Midwest region to sponsor a mile and get PHA’s Race of Our Lives campaign to our 3,000-mile goal.

Donations to the map will be accepted after today, but today is the last day to get your name on the map at Conference. Add your name to the map NOW!

Tuesday, April 29, 2014

The PHCC Initiative: The Next Chapter of PH Management


April 30 at 3 p.m. ET/12 p.m. PT

The Pulmonary Hypertension Care Centers (PHCC) initiative aims to establish a program for accreditation of centers with special expertise in pulmonary arterial hypertension, with the goal of improving overall quality of care and outcomes in patients with this life-threatening disease. Join us tomorrow for an opportunity to ask PHCC medical leadership questions and learn more about the program.

Liquid Oxygen News for Those with Medicare


Are you a liquid oxygen user with Medicare?

In certain areas across the country (see full list of these areas), Medicare now only works with specific oxygen suppliers, which means that if you have Medicare, you most likely need to use these same suppliers.

The suppliers are supposed to follow strict rules set by Medicare, but some have been breaking the rules, leaving patients unsure of their rights or options. The following outlines your rights with suppliers in these areas:

If you already are getting liquid oxygen from a supplier, then they cannot stop providing liquid oxygen to you UNLESS:

  • Your 5-year liquid oxygen service plan is ending
  • You no longer have a medical need for the equipment
  • You move outside of the supplier’s service area, or
  • You choose to go to another supplier.

If you are trying to get liquid oxygen for the first time or you are changing to a different supplier, then the supplier MUST provide you with liquid oxygen. Keep in mind that if your prescription for oxygen does not specify that it must be liquid, the supplier can provide any form of oxygen.

If you have Medicare, but you do not live in one of these areas, then suppliers do not have to provide liquid oxygen to you if you are a new patient. If you are an existing patient, then you should be unaffected by these changes.

Remember that these rules ONLY apply to suppliers who are working with Medicare! To find out if a supplier is working with Medicare, please visit CMS’s Supplier Directory. However, be aware that some suppliers may be grandfathered in and may not appear on this list. For more information or to report an issue, please contact PHA at (301) 565-3004 x773.

Last Chance to Register for FDA Meeting on PAH : Potential Speakers Must Submit Outlines


Tomorrow, Wednesday April 30, is the last chance to register for the Food and Drug Administration meeting on PAH. The actual meeting will take place on Tuesday May 13 from 1:00-5:00 at the FDA campus in Maryland. You can participate in person or online.

In addition, if you volunteered to be a panelist (by checking the appropriate box on your registration form), you must submit an outline of your comments by April 30. You should have received an email from FDA with more information. Inclusion on a panel is one of the best ways to have your voice heard, so PHA encourages all PAH patients participating in person to volunteer as panelists.

This is a rare opportunity to speak with FDA drug reviewers about what life with PH is really like and provide them with information that may shape the way the approve PH treatments in the future. Please join us! Register now Learn more about PHA buses to the meeting

For more information contact Katie at KatherineK@PHAssociation.org or 301-565-3004 x749. You can also watch a 15-minute webinar answering frequently asked questions about the meeting or view the FAQ as a pdf

Sunday, April 27, 2014

Talk with Dr. Patty George this Wednesday


Join Team PHenomenal Hope team captain, Dr. Patty George, in a virtual Facebook Q&A this coming Wednesday, April 30. The conversation will begin at 11 a.m. ET, and all participants are invited to ask Patty questions about her work as a medical professional and her involvement in Race Across America this summer.

In addition to sharing her excitement about the upcoming bike race and the grueling training involved in preparing for it, Patty will discuss the critical role she plays in taking care of patients before and after lung transplantation. She will also answer questions about her research into PH.

Patty is an assistant professor of medicine at the University of Pittsburgh School of Medicine and pulmonologist in the Comprehensive Pulmonary Hypertension Program at UPMC. Every Wednesday, UPMC hosts “Open Wall Wednesday” – an opportunity to speak virtually with a medical expert.

For an opportunity to speak with Dr. Patty George this Wednesday, join the conversation on the “Open Wall Wednesday” Facebook page.

Friday, April 25, 2014

Thursday, April 24, 2014

News: Northwestern Medicine Study Provides New Insights on Tissue Scarring in Scleroderma

News-medical.net - A discovery by Northwestern Medicine scientists could lead to potential new treatments for breaking the cycle of tissue scarring in people with scleroderma. Read article

Support Team PHenomenal Hope: Add Your Name to the Race Map Today

Is your name on the map? If not, make sure to add it by April 30!

Support Team PHenomenal Hope (Team PH) as they cycle 3,000 miles nonstop across the continental United States this June, and bring the PH community closer to a cure. Every $15 donation makes you a sponsor of one mile on our virtual map, and you also get your name added to our real map at PHA’s International PH Conference in Indianapolis. By sponsoring miles, you join Team PH in their journey and support PHA.

We are racing toward the finish! All miles in the East Coast region have been sponsored. Please select a mile from the Pacific Coast, West or Midwest region to sponsor and get PHA’s Race of Our Lives campaign to our 3,000-mile goal.

Donations to the map will be accepted through this summer, but the deadline to get your name on our map at Conference is April 30. Add your name to the map today!

Wednesday, April 23, 2014

News: Chloe Temtchine's Story on xoJane

Chloe Temtchine got some more coverage of her story and her new PH anthem, Be Brave, in xoJane. Read the story

Honor Those Who’ve Made a Difference in Your Life

Many people are affected when your life or the life of your loved one has been touched by PH. PHA’s 2014 International PH Conference and Scientific Sessions is the perfect time to reflect and acknowledge those who’ve made a difference in your life.

You can create Notes of Thanks and Remembrance to be printed in the Conference slideshow. Make your appreciation or memories known to the more than 1,500 attendees expected at Conference (attendance not required).

Learn more and submit a note today

Learn About Exciting New Initiative

The PHCC Initiative: The Next Chapter of PH Management
April 30
3 p.m. ET/12 p.m. PT
webinar: online & phone

The Pulmonary Hypertension Care Centers (PHCC) initiative aims to establish a program for accreditation of centers with special expertise in pulmonary arterial hypertension, with the goal of improving overall quality of care and outcomes in patients with this life-threatening disease. Join us for an opportunity to ask PHCC medical leadership questions and learn more about the program.

Presenters:
  • Murali Chakinala, MD
  • Erika Berman-Rosenzweig, MD
  • Diane Ramirez, Patient Advocate
  • Melisa Wilson, ARNP, ACNP-BC
Register now

Reaching Out to Community Health Professionals

Lori Oppenheimer, PHA's allied health program associate, exhibited recently at the Virginia Association of Cardiovascular and Pulmonary Rehabilitation annual conference in Staunton, Virginia. We were pleased to connect with more than 90 community health professionals in the field of cardiopulmonary rehabilitation to discuss PHA programs and resources, including the PHA Survival Guide and Envelope of Hope.

Tuesday, April 22, 2014

Conference Early-Bird Registration Closes Soon!

PHA's 2014 International PH Conference and Scientific Sessions is only 58 days away, and more than 660 people have already taken advantage of our early-bird discount. Don't miss out on this opportunity to save $50 per person on registration fees!

Early-bird registration will close on May 1 at 4 p.m. ET.

Register now

Cathy McLeod's Media Success Leads to New PHriends in Massachusetts

Cathy McLeod, a Falmouth, Mass. resident, scored her first media success in the Cape Cod Times last month. Without any prior media advocacy experience, she reached out to local reporters because she wanted to connect and bond with a patient or two in her area.

The response she got surprised her. “I was just looking for people to talk to! I thought maybe I would find two other PH patients and have a conversation with them." Cathy said. “Seven people contacted me! I’m so happy to find people who have PH like me.”

The support and enthusiasm of those who contacted her made Cathy realize that she wants to do more. She has since decided to start a support group in her town to advance the cause!

We asked Cathy to give some advice to other PHers looking to share their story in the media:

You don’t need prior media experience! This was Cathy’s first time advocating for PH through media, so you don't need to be a PR expert to be successful. If you're unsure where to begin, PHA's online media guide has resources to help you.

Focus on sharing your story. Cathy says, "I’m glad I wasn’t over prepared for the interview because I think I would have sounded more stiff. I just focused on sharing my story." You don’t need to know everything about PH. Cathy found that her personal journey resounded with the reporter and with readers.

Reach out to multiple media outlets. Cathy contacted more than one newspaper to increase the chance that her story would be covered. Consider reaching out to every newspaper, local radio station, tv station and online publication that time allows you. Do a little research and try to reach out to the reporter most likely to be interested in your story.

Visit PHA's online media guide

For more tips about sharing your story with reporters contact Elisabeth at 301-565-3004 x753 or PHAware@PHAssociation.org.

Monday, April 21, 2014

Education, Networking and Lunch with PHriends

PHA invites you to the American Thoracic Society's (ATS) 8th Annual Free Patient Forum. PHA is partnering with the Public Advisory Roundtable of ATS, an international scientific society focused on respiratory and critical care medicine, to provide this unique opportunity for pulmonary hypertension patients. On Saturday May 17, 2014 in San Diego, Calif., PH experts will gather with patients to discuss the latest in research, clinical trials and clinical care in the field. The event will be held in conjunction with the ATS International Conference.

Featuring PH Experts:
  • Wendy Hill, MSN, RN, NP-C, VA Greater Los Angeles Healthcare System/ UCLA
  • Nick Kim, MD, University of California, San Diego School of Medicine
  • Ronald Oudiz, MD, Harbor-UCLA Medical Center, Torrance
  • Jeffrey Sager, MD, MSc, Cottage Pulmonary Hypertension Center, Santa Barbara
RSVP for this free event by April 30

For more information, contact ATS2014-RSVP@PHAssociation.org.

Watch Video from Annual CrawPHish Festival

PH parent Jack Stibbs and his crew recently held their annual Woodlands CrawPHish Festival. The festival is hosted annually in Town Green Park for a day of family fun with live music, kids activities, authentic Louisiana crawfish, BBQ (for those that do not care for crawfish), networking and more. The festival brings in more than 3,000 people from all parts of the country. This year included a Texas singer/song writer, Kyle Park, as the headliner performer.

Jack Stibbs and his crew have raised more than $2 million for pulmonary hypertension research since 1999.

Watch the video below or on YouTube.

Stress Awareness Month - Resources for Caregivers

Are you a caregiver? Do you experience stress? While you may feel as if you don’t have time to tend to your own needs, the reality is that the most effective and supportive caregivers are those who also take time to take care of themselves.

Learn more

Sunday, April 20, 2014

News: Researchers Find “Off” Switch for Scleroderma

University of Michigan researchers are in the news for their role in identifying a signaling pathway that switches on scleroderma, a rare and sometimes fatal disease that causes skin and other tissue to thicken and has no cure.

Read article

Friday, April 18, 2014

Question of the Week: Health Topics

Question of the Week: What health topic would you like to learn more about? Respond in the comments below.

Add to the World PH Day Photo Mosaic Today

Stand up and be represented! With a rare disease, strength and awareness really does come in numbers. Add your face and message to the World PH Day Photo Mosaic at and read through others’ stories and messages of hope.

Thursday, April 17, 2014

Celebrate Pathlight's Birthday Online

Did you know that Pathlight, PHA's quarterly newsletter, turns 24 this May? In celebration, for the first time ever, Pathlight is now available in an electronic form, easily accessible on your computer, tablet or smartphone. Access the spring 2014 issue online now

Pathlight is a PHA member benefit. To give everyone a chance to access the online version, the above link will be available to anyone until May 1. After May 1, you must be a PHA member to access the issue. Check your membership status now

Join Carol on Patient Support Call

Patients are raving “I can’t begin to tell you how helpful this call was…” Join Carol as she facilitates the monthly Patient Support Call on Thursday, April 24 at 8 p.m. ET/5 p.m. PT.

Register now

Race of Our Lives UP Contest Ends Saturday

Sponsor a mile on our Race of our Lives map by April 19 to be a part of the raffle to win an UP activity tracker bracelet from Jawbone.

Show your support for Team PHenomenal Hope and sponsor a mile TODAY while there is still time.

Wednesday, April 16, 2014

The PHCC Initiative: The Next Chapter of PH Management

April 30
3 p.m. ET/12 p.m. PT

The Pulmonary Hypertension Care Centers (PHCC) initiative aims to establish a program for accreditation of centers with special expertise in pulmonary arterial hypertension, with the goal of improving overall quality of care and outcomes in patients with this life-threatening disease. Join us for an opportunity to ask PHCC medical leadership questions and learn more about the program.

Presenters:
  • Murali Chakinala, MD
  • Erika Berman-Rosenzweig, MD
  • Diane Ramirez, Patient Advocate
  • Melisa Wilson, ARNP, ACNP-BC
Register now

PHA's Research Room: Leaving Your Mark in the Future of PH

PHA's International PH Conference and Scientific Sessions includes a Research Room dedicated to helping researchers further their studies by allowing for the collection of data from PH patients, as well as their family and friends. This event gives researchers the rare opportunity to collect data from the largest gathering of patients and families living with PH in the world.

Join this webinar to learn about past Research Room successes, and what individuals planning to participate in the Research Room may expect. While patient participation is valuable, there is often the opportunity for family and friends to participate as well.

Presenters:
  • Eric Austin, MD, MSCI
  • Micheala Aldred, PhD
  • Wendy Chung, MD, PhD
  • C. Gregory Elliott, MD

Register now

Team PHenomenal Hope Gets Spotlight in the Media

In just two short months, Team PHenomenal Hope will be taking on Race Across America to bring awareness to pulmonary hypertension and raise funds for research. Recently, UltraRaceNews.com published a thoughtful article introducing Team PHenomenal Hope and explaining how their journey across the United States came to be. Read the article

Show your support for Team PHenomenal Hope. Sponsor a mile on the race map. For every mile you sponsor through April 19 you will be entered into a raffle to win an UP activity tracker wristband from Jawbone.

Tuesday, April 15, 2014

Patient Resources for Stress Awareness Month

“I have found that stress will aggravate my sickness and symptoms. Unfortunately, stress is a major factor in my life. Today, I am trying to minimize the amount of stress I feel and improve the way I handle it.”

April is Stress Awareness Month. Stress is a part of the human experience. It accompanies life changes, both happy and sad, from the excitement of planning a wedding to the devastation of losing a loved one. We all experience some levels of stress in our day-to-day lives.

However, when combined with a chronic illness like pulmonary hypertension, stress can be especially difficult to manage. Without proper attention, stress has the potential to take a toll on your physical health and quality of life.

Access resources for managing stress

Connect to Support by Telephone

Each month PHA offers several ways for patients, caregivers and parents to connect with each other by phone. From our monthly support calls to our Patient-to-Patient Support Line 800-748-7274, we are committed to providing opportunities for community members to join in conversation.

Learn more and connect

FDA Meeting Registration Deadline Just Two Weeks Away

On May 13, in White Oak, Md., the Food and Drug Administration will host an informal, “talk show” style meeting where PAH patients can share what it’s really like to live with pulmonary arterial hypertension. FDA will use this information when considering whether to approve PH drugs in the future.

Please help us make a better tomorrow for PAH patients by attending in person or listening in and submitting comments via webcast. Register by April 30.
  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.
Don't miss out on this unique opportunity!

Questions? Contact Katie at 301-565-3004 x749.

Monday, April 14, 2014

Charity Sunshine Tillemann-Dick Featured in Nation Swell

"She had a choice: Abandon her career as an opera singer, or risk death. She’s still singing. Meet the amazing woman out to revolutionize organ donation in America."

Read the article

Faces of PH: Amy Long

“I am so thankful that I get to continue living my life the way I want to, continue going to school, and being relatively active (I walk for exercise). I am eternally hopeful that a cure is on the horizon.” – Amy Long

Read Amy's story

PH Group in Bosnia and Herzegovina Looking to Connect

Do you have a connection to PH in Bosnia or the Bosnian diaspora? Plucna hipertenzija- Bosna i Hercegovina is looking to connect with you! The more voices looking for affordable treatments for pulmonary in Bosnia, the further they can go.

Connect

Friday, April 11, 2014

Queda un mes para el Día Mundial de HP



“La declaración de un Día Mundial de esta enfermedad, supone un paso hacia adelante en la creación de una conciencia universal en torno a la importancia de encontrar una mejora en la calidad y la esperanza de vida de más de 25 millones de personas que la padecen en el mundo.” – Asociación Nacional de Hipertensión Pulmonar (España)

…Y que va a hacer tu organización? Cuéntanos a International@PHAssociation.org

World PH Day Webinar on New PH Treatments



Join us April 29 at 12 p.m. ET/9 a.m. PT for Dr. Michael McGoon’s popular annual webinar “PH Treatments: What’s on the Horizon.” This one-hour webinar will cover the new treatments recently approved by the FDA, as well as look at treatments in the pipeline for approval in the coming years.