Monday, June 30, 2014

Prepare Your Local Emergency Workers for a PH Emergency

How updated are your local EMTs and emergency room staff on handling emergency situations with folks who have pulmonary hypertension? Send this free training webinar to your local healthcare professionals to watch and get educated on emergency treatment considerations for PH patients.

Give this webinar to your healthcare professionals

Friday, June 27, 2014

You Don't Have to Do This Alone

Find a friend for life (and for better living!) by attending a local pulmonary hypertension support group.

Find a group near you

Faces of PH: Maureen Hawkinson

“When I was finally diagnosed, I was both relieved and terrified. My life was turned upside down. As hard as those early days were, it will be two years in February 2014 since my first cardiac catheterization; I am now stable on a regiment of Remodulin, Revatio and Letairis. Exercise and the support of my family have also helped improve my quality of life immensely.”

Read Maureen's story

Thursday, June 26, 2014

Question of the Week: Your Team?

Question of the Week: Who's your team? Tell us how you cheer them on! 
Please respond in the comments below.

Congratulations to Team PH!

PHA would like to congratulate Team PHenomenal Hope for finishing the Race Across America in just 7 days, 7 hours, 15 minutes -- a day earlier than expected! We thank you for your tireless efforts over the past two years to train and raise awareness and funds for our collective fight for a cure.

A big thank you also goes out to the PH community, who rallied around Team PH through unity events and raising more than $45,000 to fill up the unity map.

You can read about their cross country journey on our tracking page.

Wednesday, June 25, 2014

New Opportunity to Rate Your Specialty Pharmacy

PHA knows that your relationship with your specialty pharmacy has a significant impact on your quality of life so earlier this year PHA launched our Specialty Pharmacy Feedback form. This simple form allows PHers or their medical professionals to share positive feedback or concerns with specialty pharmacies.

Now, we’ve updated the form to make the process even more effective. When you submit a concern, you will  have the opportunity to rate how well your specialty pharmacy responded. We’ll also be tracking how quickly concerns are addressed.

Submit your comments today!

Bring Advocacy Home this August

Noel Holly and Rep. Dana Rohrabacher (R-CA)
“Sometimes, the reason a Member hasn’t signed on to a bill is simply that no one has ever asked. There are literally tens of thousands of bills introduced each Congress, and the easiest way to figure out which ones we need to pay attention to is by looking at the requests constituents are making in meetings." -- Sara Mabry, legislative staffer for Senator Bob Casey’s office (D-PA)

Several times a year, Members of Congress return to their home states to meet with voters (you). During August, your senators and representative are home for an entire month.

Take advantage! Set up a meeting to educate them about pulmonary hypertension and ask them to co-sponsor the Pulmonary Hypertension Research and Diagnosis Act. Meet with them in one of their local offices or connect them with many constituents at once by inviting them to your support group meeting or event.

Request an Appointment Today!
Many Members of Congress who supported past PH legislation became co-sponsors after one visit from a constituent -- it's an important, effective way to make your voice heard. You don’t have to be an experienced advocate to set up a district visit. PHA has an online guide to help you.

Can't make August work? That's okay! Many Members of Congress will be spending extra time working in their home states in the months leading up to Election Day. Call your Members of Congress now and set up a meeting for later in the fall.
   
Questions? Contact PHA at Advocacy@PHAssociation.org or 301-565-3004 x749 to learn more.

Tuesday, June 24, 2014

HHT What?

June is HHT Awareness Month! What is HHT you ask? Learn about hereditary hemorrhagic telangiectasia (HHT) by checking out our resources on PH and HHT, or visiting the HHT Foundation International.

Show off Your Creativity

Do you have a creative bug in you? Medical studies have shown that creative expression can help improve physical, mental, and emotional health. Why not give it a try? Get ideas to express yourself through creative ways by checking out PHA’s e-learning guide.

Get ideas from our Creative Expression e-Learning Guide

Monday, June 23, 2014

Eat Healthy and Exercise with PH

It’s National Fruits and Vegetables Month! We know that exercising and eating healthier is difficult with PH so we created this e-learning guide on exercise and nutrition. Look at our tips here:

Read our Nutrition and Exercise e-Learning Guide

Connect with Someone Who Has Been There

Do you have questions about living with pulmonary hypertension? Would it be helpful to talk to someone who’s been there? Ryan is just one of our many great PHA PHriends available by email to answer your questions and support you in your journey as someone impacted by PH.

Connect with Ryan

Raise Awareness about Scleroderma

PHA is supporting Scleroderma Awareness Month! Learn more about scleroderma by checking out our resources on PH and scleroderma, or visiting the Scleroderma Foundation.

Sunday, June 22, 2014

Missed Conference?

Read all about what happened at PHA's International PH Conference and Scientific Sessions this weekend in Indianapolis on our Conference blog. You can also follow the conversation on Twitter, Facebook and Instagram using #PHAIndy.

Also, in the coming months you will be able to watch the recordings on PHA Classroom and PHA Online University.

Visit the Conference blog

PH Community Interview with Aletha Ellison

We caught up with Aletha Ellison, a pulmonary hypertension patient and support group leader, in the Exhibit Hall by the blogosphere. Aletha shares her PH story and what she enjoys most about Conference.

Team PH Crosses Finish Line a Day Earlier Than Expected!

Team PHenomenal Hope crossed the finish line on their 3,000 mile Race Across America last night a good day earlier than expected. PH community members gathered at the finish line in Annapolis, Md., and via Skype from PHA's Conference in Indianapolis, Ind., to cheer them on and congratulate them on such an amazing feat. You women are truly amazing!



Saturday, June 21, 2014

Interview with Dr. Michael McGoon at Conference

Dr. McGoon talks about how he got involved with pulmonary hypertension, what he likes about working in PH, and why he participates in Conference. He was recognized at the dinner today because he is retiring this week. A 2015 research award will be named in his honor for all his years of service the the PH community and the field of pulmonary hypertension.

Team PHenomenal Hope Meets Up with Conference Attendees

(noon, 6/21) Update! Team PHenomenal Hope less than 200 miles from finish!

As of 10 p.m. on Friday night, Team PHenomenal Hope is cycling through the mountains of West Virginia, closing in on their final destination of Annapolis, Md. Continue to track their progress on our tracking page.

Late Thursday evening, community members from PHA’s International PH Conference traveled to Bloomington, Ind., to cheer the team on as they cycled through (see the photo right).

As PHA President Rino Aldrighetti says, “Team Phenomenal Hope is inspiring the PH community. ... We talk about medicine as science and, sometimes, art. What Dr. Patty George and her team are doing takes us to a new level – inspiration. The PH community is with them every turn of the pedal, every mile of this race for our lives.”

Say Hello to Summer!

Put away your boots and take out your flip flops because it is officially the first day of summer! However, summer can get hot so we want our PHers to be safe while you're outside. Check out our tips, including a webinar, about staying cool and safe while having fun under the sun while living with PH.

Thursday, June 19, 2014

Question of the Week: Summer

Question of the Week: What is your favorite summer activity?
Please respond in the comments below.

Happy World Sickle Cell Day

Today is World Sickle Cell Day! Studies show that thirty percent of adults who have sickle cell disease develop mild pulmonary hypertension. Learn more about PH and sickle cell disease on our website.

Read about PH and sickle cell disease

Wednesday, June 18, 2014

We Love Our Caregivers

Want to honor your caregiver for the ways, little and big, that they support you? Submit a Caregiver Shout-Out!

Honor your caregiver

Are you Ready for PH?

Are you newly diagnosed and wondering what you would do in an emergency situation? Maybe you are figuring out insurance or how to talk about pulmonary hypertension with your family and friends. Then The Newly Diagnosed Self-Study: PH Ready might be right for you.

Register for PH Ready

Your Splurge Can Benefit the Cause

Today is National Splurge Day. Plan to do some online shopping on Amazon? If you go to our entry page first .5% of your purchases will go to PHA. Just follow these four easy steps.
  1. Visit our Amazon Smile entry page when you shop on Amazon.
  2. Choose your items
  3. Check out
  4. Feel great that you were able to give to PHA!
By using the link above, .5% of your purchase goes directly to PHA. Bookmark the link above so you can support PHA every time you shop.

You shop, PHA benefits.

Tuesday, June 17, 2014

Pher in the News: Abilene Woman Awaits Double Lung Transplant in Colorado Hospital

Abilene Reflector-Chronicle - The constant hum of an oxygen concentrator is a sound Darcy Ode and her daughter, Taylor, 19, have become accustomed to. Since being diagnosed with primary pulmonary hypertension, or PPH, in 2010, the machine and the three large liquid oxygen tanks that inhabit the corner of Darcy's living room have become her lifeline.

Read article

Happy Scleroderma Awareness Month

Do you have questions about life with pulmonary hypertension and scleroderma? We have answers!

Read our PH and scleroderma fact sheet

Follow Us at Conference

We will be reporting from Conference on the "Checkered Flag Chronicles" Conference blog. There you can also read live feeds from Twitter (#PHAIndy) and Facebook to follow the conversation from attendees.

If you are attending Conference, please share your Conference stories, photos and videos on Facebook or Twitter and be sure to mark them with the #PHAIndy hashtag.

PHA Offices Closed Friday and Monday

It's Conference time! PHA's offices will be closed Friday and Monday. Indy or bust!

Monday, June 16, 2014

Patient Support Call "A Place Where You Can Share"

“It's nice to have a place where you can share with people in a similar situation, and to be able to ask questions of each other. It was reassuring and the support is extremely beneficial,” a recent Patient Monthly Support participant shares.

Register for the next call on June 26

Make Pulmonary Hypertension a Household Name

Be a Part of the PHA PSA Blitz

Did you know that PHA’s PSAs were sent out to 3,000 TV networks and affiliates and 9,000 radio stations across the country?

Help get our PSAs aired in your city. Go to our campaign page and learn how you can make a difference in getting more people to know about pulmonary hypertension.

Listen to Steve Van Wormer’s webinar on the PSA campaign. It gives step-by-step instructions on how to contact TV stations and get our PSAs on the air. Then, let everyone know your experience on PHA’s Facebook page.

For help on reaching out to the media about PSAs, contact:
Renée Hockaday at 301-565-3004 x774 or ReneeH@PHAssociation.org
or Diane Ramirez at 336-425-6335 or diramirez87@yahoo.com

News: Possible New Type of Targeted Therapy for Pulmonary Hypertension

Reuters - Actelion Pharmaceuticals US, Inc. released today the initial, positive results from the Phase III GRIPHON study of selexipag in 1,156 patients with pulmonary arterial hypertension (PAH). Selexipag is the first non-prostacyclin analogue that acts as a stimulator for the prostaglandin receptor (IP).

Read article

Sunday, June 15, 2014

Thank You to Our PH Dads

Happy Father's Day to all the dads out there in the PH community who are living with pulmonary hypertension or caring for your loved one with PH. These are two of our favorite photos of a couple of PH dads. Please feel free to share about your father in the comments below.



PHers, Put Your Smile On!

Happy National ‘Smile Power’ Day, PHriends! Today, we want you to remember how amazing you are and how important it is to keep a positive self-image.

Learn tips on maintaining a positive self-image

Friday, June 13, 2014

Participate in Research to Bring Us Closer to a Cure

Participating in the Conference Research Room provides researchers with invaluable data to improve our understanding of pulmonary hypertension and bring us closer to a cure. If you're coming to Conference next week please make some time to come by. We have a form you can fill out in advance to save time so you can get back to Conference.

Learn more and fill out the form

Faces of PH: Kiara Tatum

"I gained so much more than I had lost. I gained PHenomenal Hope. I built up my emotional strength; I received more love and support from family and friends than expected; I rediscovered my faith. I have bad days, but I have more good days because of the love, faith, strength, support, and hope I have and receive.” 

Read Kiara's story

Team PH in the Local San Diego News!

Team PHenomenal Hope was one of four teams featured at a press conference about the Race Across America, and it got picked up on the local CBS station. Watch it below.

June is HHT Awareness Month

Do you have pulmonary hypertension and hereditary hemorrhagic telangiectasia (HHT)? Do you have questions? Our PHA PHriend, Neeta, has been living with PH and HHT since 2004, and she’s here to offer you the benefit of her experience!

Learn more and contact Neeta

Thursday, June 12, 2014

Proyecto “Lantos” para Hispanohablantes

Uno de los proyectos ganadores del programa de becas sobre Innovación y concienciación de Hipertensión Pulmonar “Lantos” en 2013 fue un sitio web creado para la comunidad latina virtual.  HPAqui es un sitio web ofrecido en español y próximamente en portugués e incluye información actualizada de la enfermedad supervisada por médicos de la Universidad Stanford. También incluye eventos, noticias, blog, y  sala de charlas para conexión entre pacientes de diferentes países latinoamericanos. HPAqui es un sitio web el cual es frecuentemente actualizado no solo con información al día de la enfermedad sino también con herramientas educacionales sobre la Hipertensión pulmonar para médicos interesados a aprender sobre la enfermedad. www.hpaqui.com

Question of the Week: Seasons

Question of the Week: What is your favorite season? Please respond in the comments below.

Wednesday, June 11, 2014

Ways to Support and Advocate For Your Loved One

Do you often find yourself in the position of advocating for your loved one and their chronic disease? Get tips on how to approach these situations to get the best message across and support your loved one in advocating for themselves when appropriate in this webinar recording.

Watch the webinar

Tuesday, June 10, 2014

VIRUS ALERT: Someone Spoofing PHA Email

It has been brought to our attention by some members of the community that they received an email that looked like it came from PHA along with a link to a google drive. The email said it was from @phassociation.org email with the name Denis Crawford and subject line “Important.” This email did not come from us, and Denis Crawford is not a staff person at PHA. Please do not click on the link just delete the email.

If you ever receive an email with an attachment or a link you did not expect from PHA please be cautious about opening it. Each staff person has their phone number in their email signature so you can contact the person over the phone to make sure the attachment is okay to open before doing so.

Please contact Web@PHAssociation.org if you have any questions or concerns.

What's the Ideal PH Treatment?

There's Still Time to Tell FDA

Whether you participated in the May 13 Food and Drug Administration (FDA) meeting on pulmonary arterial hypertension (PAH) or not, there is still time to make your voice heard!

FDA is seeking written comments until July 14 to the same questions that they posed during that meeting. The questions are about your experience living with PAH. You can answer them all or pick one or two. Bullet points or other informal approaches are welcome.

Please take a few minutes to check out the questions FDA needs answers to and submit your comments. (Scroll half-way down to II. Public Meeting Information. When you're ready, click "submit comments" at the top right.)

Learn more and submit comments

The Race Across America Begins Saturday!

We will be sending off Team PHenomenal Hope on the Race Across America this Saturday in Oceanside, Calif. The team's two years of training is finally coming to a head. We are almost there! We encourage you to join us if you are in the area. From there you can follow the team's progress on our tracking page.

The team will be embarking on the most difficult cycling race in the world, all in support of the PH community and the fight for a cure. They are excited, but also anxious because they want to make a good showing for the community. Let's lift their spirits by sending them our well wishes and thank yous. You can post a message to their Facebook page, tweet to @TeamPHenomHope or comment on their blog.

You and your family and friends can also show your support by making a donation online or text TeamPH to 56512 to get a mobile friendly browser.


PHA PHriends Help You Get Ready for Life with PH

As you undertake PH Ready and PH Ready Caregivers, PHA’s  series of e-courses that serve as a roadmap for newly diagnosed PH patients and caregivers, remember that you are encouraged to reach out to PHA PHriends to help you with questions that may come up along the way. While PH Ready and PH Ready Caregivers are full of information about treatments, living with PH, insurance, working with your medical team and more, it can be helpful to hear from an experienced patient or caregiver to know what this all means in real life.

Connect with a PHA PHriend | Register for PH Ready or PH Ready Caregivers

Monday, June 9, 2014

"Spotlight" on PHA Ukraine

Oksana Aleksandrova, director of PHA Ukraine, sat with a PH-treating cardiologist and a patient association leader for “Spotlight,” a live streaming talk show shown online Friday afternoon, June 6 in Ukraine.

Men Get PH Too

It’s Men’s Health Week! Are you a man living with PH and looking to connect with another guy who gets it? Search our peer support volunteers by gender and age

It's Scleroderma Awareness Month!

Do you have PH and scleroderma? Do you have questions? Our PHA PHriend, Mary, has been living with pulmonary hypertension and scleroderma since 2012, and she’s here to offer you support!

Learn more and contact Mary

Sunday, June 8, 2014

Happy Best PHriends Day!

Today is national Best Friends Day and, at PHA, we decided it’s not only a day to celebrate friends, but your best PHriends! We got some great photos from the PH online community and created these collages. Thank you to everyone who submitted a photo; now, go tell your best PHriend how much you appreciate them.



Saturday, June 7, 2014

Have a PH-Related Question?

Have a question and can’t find the answer? Ask us! Our team of experienced patients and caregivers can provide information to your questions about living with pulmonary hypertension. Our PH Email Mentors can't answer medical questions, but they can point you in the right direction for information and resources available to PH patients and family members.

Ask a question!

Reata Enrolls First Patient In Promising, New Pulmonary Arterial Hypertension Trial

BioNews Texas - Irving-based Reata Pharmaceuticals, a privately held company aiming to translate the company’s groundbreaking research into new therapies, has enrolled the first patient in a Phase 2 dose-ranging study that will examine the safety, tolerability, and efficacy of bardoxolone methyl in patients with pulmonary arterial hypertension (PAH).

Read article | Learn more about other PH clinical trials

Friday, June 6, 2014

News: Bayer HealthCare To Evaluate Riociguat In New Indication - Quick Facts

RTTNews - Bayer HealthCare announced the start of a randomized, double-blind, placebo-controlled Phase IIb study. The RISE-IIP study or Riociguat in patients with Symptomatic Pulmonary Hypertension associated with Idiopathic Interstitial Pneumonias is designed to investigate the efficacy and safety of riociguat in patients with symptomatic pulmonary hypertension or PH associated with idiopathic interstitial pneumonia or IIP.

Read article | Learn more about other PH clinical trials

Leaving on a Jet Plane: Tips for Traveling with PH

With PHA’s 2014 International PH Conference and Scientific Sessions fast approaching and summer right on its heels, it’s time to prepare for family trips and vacations. While traveling with PH can be hard, PHA offers plenty of resources to help get you started as you plan for a fun, exciting, and safe time away from home.

Whether you are going across the country or across the globe, by air or sea, PHA has all of the information that you need to start planning. Have a safe trip, and we hope to see you at Conference!

Tips for travel

Thursday, June 5, 2014

News: New Research Links Iraq Dust to Ill Soldiers

USA Today - Titanium and other metals found in dust at a base in Iraq have been linked to the dust found in six sick soldiers' lungs, according to a study set to be released Monday.

"We biopsied several patients and found titanium in every single one of them," said Anthony Szema, an assistant professor at Stony Brook School of Medicine who specializes in pulmonology and allergies.

Titanium and iron are both associated with pulmonary fibrosis and pulmonary hypertension in humans, Szema said.

Read article

Research PHor the Kids

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. During a recent webinar the 2014 grantees, Dr. Mehdi Fini and Dr. Melanie Nies, discussed their research and the potential applications for pediatric PH treatments.

Watch the webinar

Send Team PHenomenal Hope Your Well Wishes!

The Race Across America is next week! Team PHenomenal Hope has been training intensely for two years, and next Saturday they will embark on the most difficult cycling race in the world. They are doing all this to support you, the PH community.

Let's send them our well wishes and thanks so they know how much we appreciate them and this difficult endeavor they have undertaken. Let's flood their channels with our thank yous! Post a message to their Facebook page, tweet to @TeamPHenomHope or comment on their blog.

We also now have text-to-donate. Simply text TeamPH to 56512, and you will get a mobile phone-friendly browser that allows you to donate to the team!

Wednesday, June 4, 2014

Information for Newly Diagnosed Patients

Were you or someone you know recently diagnosed with PH? We have an online program that can help you feel less overwhelmed. PHA’s The Newly Diagnosed Self-Study: PH Ready and its companion curriculum, PH Ready Caregivers, are designed to help you understand what it means to live with PH and or answer questions you may have.

PH Ready and PH Ready Caregivers offer a series of e-courses that serve as a roadmap for newly diagnosed PH patients and caregivers.

Register for the program

Tuesday, June 3, 2014

Conference Registration Closing June 6

PHA’s 2014 International PH Conference and Scientific Sessions is only two weeks away! If you haven’t registered yet – there is still time left. More than 1,307 PH community members have already registered to attend this unique educational and networking event taking place June 20-22 in Indianapolis, Ind.

In 2012, we had an overwhelming response to registration, and we had to close online registration and start a waiting list. Space is limited, so register now to reserve your spot! Online registration will be available until Friday, June 6 at 3 p.m. ET.

For questions about registration, contact Registration@PHAssociation.org or call 301-565-3004 x763.

Video Tutorial Demystifies District Visits

“I decided to visit my Member of Congress after watching a video tutorial on PHA’s website that explained how to set up a district visit. I NEVER thought that I could ever visit my Member of Congress to educate him about PH. I’ve never done anything like this before!”  --Noel Holly, 2013

Check out our NEW District Visit guide and get involved in advocacy today!

Monday, June 2, 2014

New Releases of Free CMEs/CEUs on PHA Online University

Physicians and allied health professionals can take advantage of PHA’s medical education hub, PHA Online University, and patients can encourage them to look into its vast resources. As an online initiative that provides long-distance yet accessible medical education for physicians and allied health professionals, PHA Online University supports the need to raise awareness for PH, which, as you know, is oftentimes under-diagnosed or misdiagnosed within the medical community.

Through this online learning platform, physicians and allied health nurses can:
  • Earn free online CME credits/CEUs
  • Find valuable resources provided by PHA, such as information on treatment, research programs, abstracts and presentations from past meetings
  •  Access PHA’s medical journal, Advances in Pulmonary Hypertension
The following are some of our new course releases:

Quality of Life and Palliative Care
Examine the psychosocial determinants of a patient’s quality of life and end-of-life experiences.

Screening Systemic Scleroderma for PAH
Review the classification and staging of pulmonary hypertension, SSc phenotypes, and how to properly screen patients with PAH.

Mechanical Support and RV Failure
Discuss lung transplantation information and the impact of Extracorporeal Life Support among PAH patients.

Pulmonary Hypertension in Sickle Cell Disease
Recognize multifactorial aspects of emodynamic etiology of PH, how patients with SCD have severe impairments in aerobic exercise capacity, and the relationship between anemia and PH.

Clinical Vignettes
PHA Online University is excited to release clinical vignettes that comprise of case studies and provide clinical teachings on various treatments, patient care and a medical understanding of all types of pulmonary hypertension. Cardiology | Psychosocial | Rheumatology

To learn about more course offerings and to explore PH medical education and resources, visit www.PHAOnlineUniv.org.