Friday, January 31, 2014

New Tools to Estimate Healthcare Costs

The National Health Council (NHC)  launched two new tools to help you make informed decisions on the right health insurance. The website, PuttingPatientsFirst.net, has two components and creates a comprehensive picture of health insurance.

The Estimate My Cost tool helps project how annual medical services and drug usage will impact the cost of health insurance in your state. The second component, Explore My Options, will allow you to review six different scenarios that factor in health conditions, medical and drug usage that effect the price of healthcare.

Learn more and visit NHC’s website PuttingPatientsFirst.net.

Question of the Week: What Would You Do with $5,000?

Respond in the comments below.

Scleroderma African-American Conference

Our friends at the Scleroderma Foundation are hosting an African-American Patient Education Day on Saturday, March 22. The Scleroderma Foundation along with Virginia Steen, MD, from Georgetown University Medical Center, and Laura K. Hummers, MD, from Johns Hopkins University Medical Center, will discuss risk factors specific to the African American community. The educational learning is geared towards patients and caregivers and will be held in Philadelphia, Pa.

Learn more and register

Thursday, January 30, 2014

Connect with a Mentor

It’s Mentor Month! We love our PHA PHriends who are experienced PH patients and caregivers available to offer hope and support throughout your PH journey.

Connect with a PHriend via phone, email or chat

Wednesday, January 29, 2014

We've Got Your Race Gear

The Race of Our Lives campaign is speeding up! There are only 137 days until the start of Race Across America. Do you have your gear yet?

Donate or fundraise $150 to the campaign and receive a T-shirt, water bottle and bracelet. Show your support of Team PHenomenal Hope!

Get your Race gear

Self-Empowerment in the New Year

Make this the year to stick with your resolutions. Learn about PHA's resources that can help you empower yourself and make a commitment to a healthier you this year in this new PHA Classroom e-Learning Guide. The guide includes tips for maintaining a positive self-image, nurturing partnerships with your medical professionals, and patient-to-patient tips. 

View the Self-Empowerment in the New Year e-Learning Guide

Tuesday, January 28, 2014

Pulmonary Hypertension Patient Does TEDx Talk

Christina Danyluk recently gave a TEDx talk on "Why I Smile at Pain" about her life with medical adversity.

Watch the 10 min. video

Nominate Someone Outstanding for an Award

Do you know an outstanding support group leader who should be recognized for his/her hard work? How about an outstanding patient, caregiver or allied health professional?

Consider honoring the unique contributions of select individuals in your life by nominating them for a PHA Outstanding Member Award. Award winners will be recognized at our 2014 International PH Conference and Scientific Sessions this June!

Award categories include:
  • Outstanding Allied Health Professional
  • Outstanding Caregiver
  • Outstanding PH Citizen
  • Outstanding Support Group Leader
  • Outstanding Young PH Citizen
  •  Outstanding Physician
  • Julie Hendry Memorial Scholarship Award – this award is self-nominated and given to a non-patient volunteer
Learn more and nominate a worthy candidate today

Monday, January 27, 2014

Halfway to Finish Line in Race of Our Lives

We are more than halfway there! The Race of Our Lives campaign has sold half the miles on the “Sponsor a Mile” map. That accounts for 1,500 miles of the 3,000 miles that Team PHenomenal Hope will be racing in June. Way to go!

There are still miles left to be sponsored – fewer than 1,500 to be exact. The East Coast region is already sold out. Which region will be next? The race is on!

Already purchased a mile? Spread the word to family and friends, and let them know that $15 sponsors one mile. Every mile counts. Every mile helps support vital PH research and programs for patients.

Learn more about sponsoring a mile

Heart Failure and PH Seminar in Ill.

If you are near the Springfield, Ill., area there will be a seminar next week on heart failure and pulmonary hypertension at the Springfield Clinic. Dr. Singla will talk about the warning signs of heart failure and what can be done to treat it.

Learn more and register

10 Things To Do For Better Living With Chronic Thromboembolic PH (CTEPH)

  1. Learn the basics on CTEPH
  2. Join PHA’s CTEPH Facebook group
  3. Join PHA’s CTEPH Google email group
  4. Email a CTEPH patient mentor
  5. Share your story online
  6. Order PHA’s Pulmonary Hypertension: A Patient’s Survival Guide, our comprehensive resource for understanding and coping with PH
  7. Take our survey. Tell us how to improve CTEPH resources
  8. Attend PHA’s International PH Conference
  9. Join PHA to receive Pathlight, discounts and more
  10. Come up with your own ideas and let us know! Email Outreach@PHAssociation.org

Friday, January 24, 2014

Riociguat Approved in Japan

Bayer recently received approval for their pulmonary hypertension drug riociguat (Adempas) in Japan.

Read article | Visit treatments worldwide chart

Founders of the Field Discuss the Evolution of our Understanding of PH

Last month key founders of the modern pulmonary hypertension field sat on a panel to discuss the evolution of our understanding of the mechanisms and physiology of PH. Dr. Stephen Mathai from Johns Hopkins University interviews Drs. Bruce Brundage, C. Gregory Elliott and Lewis Rubin (right) in this PHA Classroom recording.

Watch recording of PH experts

PH Medical Professionals Show Support of Team PHenomenal Hope

Dr. Hap Farber of Boston University will take part in a ski challenge to cover 100,000 total vertical feet with 48 ski runs in 9 hours – all to raise funds for pulmonary hypertension. Impressive! We are so inspired that our PH medical professional community is supporting Team PHenomenal Hope through the Race of Our Lives campaign alongside our patients.

Learn more about Dr. Farber’s challenge | Visit the Race of Our Lives site

Thursday, January 23, 2014

Question of the Week: Membership

Please respond in the comments below.

Program for Newly Diagnosed Patients and Families

Are you recently diagnosed with pulmonary hypertension or has a member of your family been diagnosed? Sign-up today for The Newly Diagnosed Self-Study: PH Ready and PH Ready Caregivers. The curriculum allows you to get up to speed with your understanding of PH on your own terms, all the while you are encouraged to reach out to our PHA PHriends to help you if you have questions, concerns or just want to hear from someone else living with or affected by PH.

Register for PH Ready

Wednesday, January 22, 2014

Coping with Life with Pulmonary Hypertension

PHA has a number of resources on coping with pulmonary hypertension - whether you are a caregiver, newly diagnosed or have been living with PH for a long-time, whether you are a teen living with PH or a parent, we have articles to help you face the emotional aspects of living with PH. View coping resources

There are also PHA PHriends to chat, talk or write to help you through your PH journey.

Action Alert: Do You Live in One of These States?

PHA is targeting Members of Congress in twelve states to be our next group of PH Research and Diagnosis Act co-sponsors. Do you live in one of these states?
  • Alabama
  • Florida
  • California
  • Illinois
  • Indiana
  • Michigan
  • New Jersey
  • New York
  • Ohio
  • Pennsylvania
  • Washington
  • West Virginia
If you do, we need you! No matter what your party affiliation, you can help advance the PH diagnosis and treatment through advocacy. Contact Elisabeth Williams to get started at Advocacy@PHAssociation.org.

Don’t live in one of our target states, but interested in advocacy? Let Elisabeth know – we have opportunities for you, too!

International Spotlight: PH Awareness Month in Asia

It’s been six weeks since Awareness Month, but the awareness is still rolling out! A few news stories recently hit local stands in Asia highlighting November awareness activities on that side of the world. Here’s a snapshot:
  • Patients and families in Guangzhou, China, held a “Blue Fun Run.” Some healthy runners tied sandbags to their legs and attempted to run, trying to get a better idea of what it is like to have PH. The event had runners winding their way through some of the busiest sections of Guangzhou. This event continued iSEEK China’s heavy-duty awareness raising after a widely viewed appearance on national TV and a feature on the front page of YouKu (Chinese YouTube) with 6.5 million views. Read the full story
  • PHA Japan hosted the Six-Minute Run for PH to raise awareness following its 7th Annual Conference for patients, families and medical professionals in Osaka.
  • PHA Korea hosted its 2nd Annual Conference, welcoming Noriko Murakami, president of PHA Japan, as one of the keynote speakers.
  • Singapore Support Group hosted a Blue Lips Awareness Campaign at five area hospitals, and by the end of the campaign, the group had collected a whopping 1,111 blue kisses from people who were spreading awareness or just learning about pulmonary hypertension. Read the full story

Friday, January 17, 2014

PHA Offices Closed Monday

PHA offices are closed Monday for the holiday.

New Research May Boost Drug Efficacy

From MedicalXpress.com - The development of new, more effective vasodilators to treat pulmonary arterial hypertension (PAH) has been hampered because of their systemic toxicity and adverse side effects. An international team of investigators seeking to surmount these problems and increase drug efficacy have determined that a vascular homing peptide can selectively target hypertensive pulmonary arteries to boost the pulmonary but not systemic effects of vasodilators. Importantly for potential clinical use, this peptide retains its activity when given sublingually. The results using a rat model of PAH are published in the American Journal of Pathology. Read article

Webinar for Newly Diagnosed Patients and Their Caregivers

We invite you to join us Tuesday for this wrap-up webinar, particularly targeted for participants in Newly Diagnosed Self-Study: PH Ready and Newly Diagnosed Self-Study: PH Ready Caregivers. Dr. Jean Elwing of the University of Cincinnati will be reviewing key points from both courses’ curriculums and offering tips on how to better cope and manage pulmonary hypertension.

Guest PHA PHriends (peer support volunteers) will also be available to help answer any questions. Course participants and all other interested individuals are invited to attend!

Register

Thursday, January 16, 2014

Parent Support Call Next Week

It can be a struggle to balance everyone's needs when a member of the family has pulmonary hypertension. Join other parents of kids who have PH to discuss how to maximize your family's coping and resiliency while living with PH.

We have two call times on Jan. 20. Register for the one you want:
8 p.m. ET/5 p.m. PT AND 11 p.m. ET/8 p.m. PT

Get Fit While You Support the Cause

Did you set a New Year's resolution to get fit? Now you can conquer your resolution while helping the PH cause at the same time! Consider creating a virtual fundraising page based on your fitness goals in support of Team PHenomenal Hope and the Race of Our Lives campaign. You could even win a registration to our 2014 Conference for yourself and your caregiver.

Whether you plan to walk, bike, dance, or any other way you plan to move – you can do it while raising funds for PH research and programs for patients.

Learn more about getting fit for the cause

January's Patient Telephone Support Call Next Week

Looking to connect with other patients? Our monthly telephone support group call is next week Jan. 23 at 8 p.m. ET/5 p.m. PT. Talk to other patients about life with PH and learn about resources.

Register

Wednesday, January 15, 2014

Get Organized with PHA's Toolkit

Did you resolve to get yourself more organized? Patients and caregivers alike recommend PHA’s Empowered Patient Online Toolkit as a great way to stay on top of symptoms, appointments, medications and more. Check it out and see if it’s right for you, too.

View and download the toolkit

Conference Registration Now Open!

Registration for PHA’s 2014 International PH Conference and Scientific Sessions in June is now open!

Did you know that our Conference is the largest gathering of the PH community in the world? That includes patients, caregivers, medical professionals, researchers and friends coming together for three days of education and networking. Join us in Indianapolis – “The Crossroads of America” – June 20-22, for an experience you won’t want to miss.

Register early to receive a $50 discount off your registration fee. Learn more and register today

Tuesday, January 14, 2014

Treatment Factsheets Updated

PHA's treatment factsheets have been updated by our Scientific Leadership Council (SLC). PHA's SLC is currently working on creating factsheets on the three drugs approved by the Food and Drug Administration (FDA) in the past few months that will be coming on the market soon.

Read the updated treatment factsheets

Friday, January 10, 2014

Join Us for The PHenomenal Mile!

The winter issue of PHA's newsletter, Pathlight, will be hitting mailboxes any day now and inside the issue we unveil a new component to the Race of our Lives campaign. Be on the lookout for a special ad in the issue about our upcoming nationwide event – The PHenomenal Mile – on April 12!

We’ll be posting more information on it soon, so stay tuned. But in the meantime… save the date! www.PHAssociation.org/PHenomenalMile 

Thursday, January 9, 2014

Latest PHA News Available - Looking Forward to 2014

The latest issue of PHANews is now available, including a blog from PHA President Rino Aldrighetti about key PHA projects for 2014.

Read PHANews

Wednesday, January 8, 2014

Traveling Hope Road: A PH Patient Treks Across the Country

Diane and her son stop in the Redwood National Forest
during the course of their trip.
Last summer, pulmonary hypertension patient Diane Leavitt drove across the country on a journey she calls “Traveling Hope Road.” As she went, she visited PH patients and others along the way, filming interviews and creating an online documentary she hopes will make life a little easier for the PH community and others dealing with life’s ups and downs. Her documentary is now available, and you can view it below or on YouTube.

“It was 33 days in my Ford Focus with my 6-foot-tall son and me, seeing our country and bringing awareness to PH,” Diane says. “The journey was amazing.”

Diane started in her home state of Maine where she teaches high school and college. “The idea for the cross-country trip came from a life-long desire to take such a trip. This past year was physically challenging for me, and I was concerned that waiting any longer could prevent me from doing the trip,” Diane says.

“Additionally, I have a student, Josh, who battled cancer and is on the winning side right now. He and I saw many high-schoolers complaining, ‘My life stinks….’ Typically, their lives were pretty great, but they were having that bad day of a coffee spill or some other mundane issue. Josh and I would smirk at each other knowingly. I want our youth to appreciate what they have and be equipped to move beyond obstacles as the real ones will occur at some point in their lives.”

Diane and her son made 22 stops along their journey, staying in 16 states as she traveled to California and back again. “My favorite interviews came from PH patients in the Sacramento, Calif., area,” Diane remembers. “They were so excited about the video and about the opportunity to help someone else with this condition. They also felt that it would be helpful for them to share this video with their families in the hopes of better explaining their unique situation.”

Having completed this project, Diane feels even more strongly that anything is possible. “Folks should not lose hope and should not feel they are alone,” she says. “Reach out to the PH support groups or support line that PHA offers. It’s an illness that is difficult to explain to others, especially our families. PHA can be a tremendous support to patients. Be sure to ask questions, be sure to find out what exercising you can do so that you stay in shape even though you might not be able to ‘run’ or pick things up, or whatever your limits are. Work around those limits and live with PH.”

A More Fulfilling Life This Year

2014 has just begun – resolve to live life to the fullest! Learn tips and tools to live a healthier and more fulfilling life at your local support group.

Find a support group today

Tuesday, January 7, 2014

Blog with Us

Are you a young adult living with pulmonary hypertension? Are you living with PH and an associated condition? Let us know – we’d love you to join our team of bloggers – spreading the word and sharing your story of living with PH.

Contact Outreach@PHAssociation.org if you are interested in blogging or visit our Generation Hope Blog or PH Plus Blog to read stories.

Monday, January 6, 2014

Resolve to Stay Informed This Year

Do you enjoy reading PHA Daily Beat but sometimes don't have the time to come visit our page? Did you know you can sign up to receive Daily Beat directly into your email Inbox or RSS feed? Sign up in the top right or our page.

Friday, January 3, 2014

Nutrition and Exercise e-Learning Guide for the New Year

Just in time for helping you meet your diet and exercise New Year's resolutions, we have created an e-learning guide about nutrition and exercise. We all want to get moving and eat healthy, but where to start? This e-learning guide provides all the how-to information for getting in shape with pulmonary hypertension.

Go to the e-learning guide

Wednesday, January 1, 2014