Monday, August 3, 2015

Free Online Webinar Tomorrow: Cardiopulmonary Rehabilitation in PH

Taking Control: The Role of
Cardiopulmonary Rehabilitation in PH

Tuesday, Aug. 4, 2015, 4 p.m. ET
Online Webinar


https://cc.readytalk.com/cc/s/registrations/new?cid=4q7qybkpzbir

Join Daniel Fox, MD to learn about the role of cardiopulmonary rehabilitation in PH. The focus of this webinar will be to provide a comprehensive overview of the role of cardiopulmonary rehabilitation in the pulmonary hypertension patient population. Specifically, we will address “What types of rehab are appropriate?”, “Are there limitations that should inform how and where I exercise?”, and “What are the benefits of cardiopulmonary rehabilitation in patients with PH?” We will review the current evidence for cardiopulmonary rehab, common rehab protocols and exercises, and will provide an opportunity for questions and answers surrounding this important topic. Learn more and register.

Friday, July 31, 2015

Want to Pitch Your PH Story? Learn Tips From Former TV Health Reporter

Monday, August 3, 2015
8:00 p.m. ET / 5:00 p.m. PT
FREE Online Webinar

Register today! 

https://cc.readytalk.com/cc/s/registrations/new?cid=cx0tu9b0jphg
So you have a great story to tell – one that will make more people aware about PH. Now what?

Learn Five Steps to Pitching Your Story for the Media. Understand how a newsroom works and how to frame what makes your story newsworthy.

Join PHA’s VP of Communications & Marketing and former TV health reporter Kelly Williams for the second in PHA’s Media Speakers Training. Use Your Story to Fight PH. Register now.

Thursday, July 30, 2015

Special Summer Camp Gives PH Patients Experiences Typically Out of Reach for Kids with their Condition

Every July, since 2007, about 25 pediatric pulmonary hypertension (PH) patients experience a summer ritual most kids with the disease only experience through movies and television. They go to summer camp.

PH is incurable and life threatening, as it can lead to failure of the right side of the heart as it pushes hard to get blood through arteries in the lungs narrowed by the disease. Without treatment, the average survival time is 2.8 years with symptoms that include shortness of breath, fatigue and fainting. PH too often looks like asthma or other less threatening illnesses.

With bags and backpacks stuffed with enough portable oxygen tanks, infusion pumps and oral medication to last a week, the lucky PH campers live in dormitories at Echo Hill Outdoor School (EHOS) on Maryland’s eastern shore.  Echo school staff teach classes in ecology, history and nature, guiding campers through exercises in swimming, zip lining, canoeing, dancing and other physical activities kids with PH believe to be off limits for people with their condition. The 2015 camp takes place from July 27 – August 1.

“Our mission is to assist our campers as they safely go at least two steps beyond their comfort zone,” said medical director, Dr. Brian Hanna, one of the leading pediatric pulmonary hypertension specialists in the U.S.  “These kids have had or are waiting for heart and lung transplants or are otherwise dependent on multiple daily treatments. Heart Camp is the first time many of them have spent a full day without a parent or a night away from home, let alone an entire week in an environment that challenges them physically, socially and even psychologically.”

About a dozen healthcare professionals, including physicians, nurses, therapists, psychologists, most of them colleagues of Dr. Hanna at Children’s Hospital of Philadelphia, donate vacation days to serve as volunteer medical staff at the camp.  They administer regular daily treatments, monitor the campers’ health, deliver emergency care when needed, and provide necessary psychological support. 

Families learn about the camp from transplant centers and family support groups offered through the Pulmonary Hypertension Association (PHA), the nation’s leading PH nonprofit, which provides support for patients and their caregivers; medical education for healthcare providers; awareness programs; and funding for research to find ways to prevent and cure PH. PHA-funded studies include work that could lead to treatments designed specifically for children with the disease.  While there are 12 PH medications, none is approved for pediatric patients.

About EHOS Heart Camp
The EHOS Heart Camp residential program invites campers, between 8 and 17 years of age, who heart and/or lung transplant patients and children with Pulmonary Hypertension. Camper eligibility is determined upon recommendation by a pediatric cardiologist and approval by the camp’s medical director. The actual cost of Camp is $1100, but the only charge to a camper is $50. For more information, including ways to support the effort, please go to www.EHOS.org.

Wednesday, July 29, 2015

PH Care Centers Workshops to Be Held at PHPN Symposium

The upcoming PHPN Symposium for healthcare professionals, which will be held in Arlington, Va., from Sept. 17-19, 2015, will feature two unique opportunities for those seeking PHA's Accreditation for their Pulmonary Hypertension Care Centers.

Since early 2011, PHA's Scientific Leadership Council, which is made up of 28 global leaders in the field of pulmonary hypertension, has spearheaded the PHA-Accredited PH Care Centers (PHCC) initiative to establish a program for accreditation of centers with special expertise in pulmonary hypertension (PH), particularly pulmonary arterial hypertension (PAH), to raise the overall quality of care and outcomes in patients with this life-threatening disease. Today, there are 26 Adult and Pediatric Comprehensive Care Centers that have received accreditation from PHA.

PH Care Centers are encouraged to apply. And, there will be two workshops at the 2015 PHPN Symposium which are designed to assist interested centers in the application process.

The Accreditation Journey: PHCC Site Visits 
Friday, Sept. 18, 11:30 a.m. - 12:30 p.m.
Led by expert site reviewers

PH Care Centers (PHCC) Workshop
Saturday, Sept. 19, 2015, 2:30 p.m. - 4:00 p.m.
Recent developments and structural changes to the PHCC program will be discussed

There is no additional fee for Symposium registrants to attend these workshops, however space is limited. To participate, please check the box on your Symposium registration form. If you have already registered for Symposium, please email PHCC@PHAssociation.org with your first/last name and occupation.

More Than 200 Community Members Join Us "on the Road"

http://www.phassociation.org/ontheroad
This past Saturday, July 25, 2015, PHA visited Philadelphia, Pa., with our free day-long event, PHA on the Road: PH Patients and Families Education Forum. More than 200 patients, family members, caregivers and medical professionals were in attendance to learn, connect and network in the spirit of the day.

The highlight of the day was the keynote address given by Leslie Polss. The PH patient, advocate and Delaware Valley Support Group co-Leader spoke about her experience with PH and how she would not let the disease limit her experiences. She knew that she was not going to let PH keep her from fulfilling one of her life's dreams of seeing the Northern Lights, despite needing to be in frigid cold temperatures to see the visual phenomenon.
http://www.phassociation.org/ontheroad
Leslie's story of how she came to fulfill this dream in March 2014, in Fairbanks, Alaska, was truly inspiring. She told her audience, "if there's something you really want to do, find a way to do it."

Another special feature of the day was the question & answer session that was hosted specifically for children and teens. Dr. Brian Hanna of Children's Hospital of the Philadelphia, and Rachel Tkaczyk, MSN, CRNP, of the Morgan Stanley Children’s Hospital, came to the PHA on the Road Kids' Room to speak with the children in attendance. The group, which was made up of both pediatric patients and young family members of PH patients, made a list of questions about PH to ask during the session. The medical professionals spoke with their young audience and answered their questions.

Dr. Brian Hanna and Rachel Tkaczyk, MSN,CRNP (back) answer questions.
PHA on the Road is not over yet! We are visiting Phoenix, Ariz., and St. Louis, Mo., in October.  

Tomorrow: Connective Tissue Webinar

Thursday, July 30, 2015, 2:30 p.m. ET/11:30 a.m. PT
Presented by Yon Sung, MD and Lorinda Chung, MD

This webinar will describe how the pathology and pathophysiology of Connective Tissue Disease – pulmonary arterial hypertension differs from idiopathic PAH. It will also discuss the evidence for the use of immunosuppression in CTD – PAH. This is a CME webinar. Learn more or register.

Tuesday, July 28, 2015

Find a Support Group Near You

Remember when you or your loved one was diagnosed with pulmonary hypertension? Was it an emotional experience? Difficult or challenging? Maybe you think you don’t need a PH support group, but… what if they need you? Give the gift of hope, share your story and inspire others at the next PH Support Group. Find one near you.