Wednesday, October 31, 2012

Tomorrow is PH Online Awareness Day!

We are kicking off Pulmonary Hypertension Awareness Month with a day of worldwide action online. Let's go global PHers!

RSVP, get ideas, and invite your friends!

Last Chance to RSVP for PHA’s Congressional Luncheon

“Whenever we, the patients, can put a face to PH we have the potential to help many.
– Jeanette Morrill

Help put a face on pulmonary hypertension in Congress. RSVP by November 6 for PHA’s free luncheon on Capitol Hill. RSVP to ElisabethW@PHAssociation.org

PHA’s Congressional Luncheon
Tuesday, November 13, 2012

Dirksen Senate Office Bldg., Room 106
Washington, D.C.

Registration opens: 11:45 a.m.
Program begins: 12:15 p.m.

RSVP to ElisabethW@PHAssociation.org or 301-565-3004 x753
Lunch is free and transportation is available from PHA’s office. Mention your travel plans when you RSVP.

P.S. No matter where you live, invite your Members of Congress to attend the Luncheon!

Tuesday, October 30, 2012

Events this Coming Weekend in CA, MD, NE, NM, NY, TX

Seven PHA Special Events are taking place this coming weekend in California, Maryland, Nebraska, New Mexico, New York and Texas. If you're in any of these areas we hope you can join in on the fun!

California
12th Annual Race Against PH
Sunday, Nov. 4
Stanford University, Standford, Calif.
Learn more

California
Fresno Six-Minute Marathon
Sunday, Nov. 4
Oso de Oro Lake Park, Fresno, Calif.
Learn more

Maryland
Vision of Hope Gala
Saturday, Nov. 3
Valley Mansion, Cockeysville, Md. (Baltimore area)
Learn more

Nebraska
7th Annual PHenomenal Hope for a Cure Brunch
Saturday, Nov. 3
DC Centre, Omaha, Neb.
Learn more

New Mexico
3rd Annual Breathe Easy 5K
Saturday, Nov. 3
Athlete's Edge, Albuquerque, N.M.
Learn more

New York
2nd Annual Sarah Smiles PHun-Raiser for PH
Saturday, Nov. 3
Elks Lodge, Camilus, N.Y.
Learn more

Texas
6th Annual North Texas Zebra PHriends 5K Run and PHun Walk for a Cure
Saturday, Nov. 3
Andy Brown East Park, Coppell, Texas
Learn more

View Video of Local Lady Godiva Winner Shari Caffrey

A message from Shari Caffrey:

I would like to extend my thanks to Godiva Chocolatier for presenting me with the honor of Summer 2012 West/Midwest Region Local Lady Godiva.

The team at Godiva came to our home (ironically and appropriately) on the 3rd year anniversary of Tay’s passing in September and filmed our family for over 10 hours resulting in the beautiful video below. Please help us to spread the word about Tay’s story and pulmonary hypertension by posting this link on your Facebook page and emailing it to all your friends and family.

Also, thank you for your continued support, helping to raise awareness about PH and funds for the Pulmonary Hypertension Association’s research programs.

Enjoy.


PHA Office Closed Due to Hurricane

Due to Hurricane Sandy, PHA's office is closed today. Some staff may be checking email from home if they have power.

Friday, October 26, 2012

Faces of Pulmonary Hypertension: Lucas Van Wormer

"We just noticed that he was sluggish and not feeling well,” says Lucas’ father, Steve Van Wormer. “He was basically being misdiagnosed with asthma."

Read Lucas' story

Get in on the (PH Awareness Month) Action – Webinar Now Available

When you raise PH awareness during November – Pulmonary Hypertension Awareness Month – you’re part of a global team thousands strong. It’s not too late to get involved! Jump-start your creativity with the webinar recording Get in on the (PH Awareness Month) Action!

Watch the webinar for Awareness Month ideas

Hurricane Sandy Coming Your Way? Create a PH Emergency Kit

It's important for pulmonary hypertension patients to keep their PH-specific medications and medical supplies with them at all times. Preparing an emergency kit is the best way to ensure you have everything ready at a moment’s notice.

Read more about what you should include in your pulmonary hypertension emergency kit

Possible New Actelion Pulmonary Hypertension Drug Has Positive Clinical Trial Results

(Reuters) - A new lung and heart drug from Actelion, macitentan, prolonged overall survival by more than a third in a clinical trial, reassuring Europe's leading biotech company that it has a viable successor to its current top seller.

Note from the editor: This article is a little misleading, implying that Tracleer will be replaced. Richard Channick, MD provided us with this clarification:
Tracleer will not be going off the market. Starting 2015, there may be generic forms of Tracleer (bosentan) available, just like there are generics for many drugs.

Macitentan is an experimental drug, similar in some ways to Tracleer but with some potential advantages. The results of a large study with macitentan were recently presented and were quite positive. However, macitentan will not replace Tracleer, but will provide another potential treatment option for PAH patients.

Read the article

Thursday, October 25, 2012

Pulmonary Hypertension Online Awareness Day - Worldwide Nov. 1!

We're going global on the World Wide Web! Help us kick off Pulmonary Hypertension Awareness Month with a day of worldwide action online. We have made participating easy with plenty of ideas and sample messages for you to use. Even without social networking, you can share through email or by posting your story on our website.

Get ideas and RSVP for PH Online Awareness Day

Watch Video of McNiff Family Supporting Pulmonary Hypertension Research Through a Half Marathon

Britt NcNiff ran a half marathon in honor of her young daughter, Mimi, and in support of pulmonary hypertension pediatric research. The McNiff family raised over $12,000 for PHA's Robyn Barst Pediatric Research and Mentoring Fund for Pulmonary Hypertension and created this touching video of their family on race day.


Bid on Maná Guitar to Support Brazilian Pulmonary Hypertension Foundation

This is an electric guitar actually played in the Mexican rock band Maná. It’s also autographed. It is up for auction on eBay as a fundraiser for ABRAF, a Brazilian foundation for families and friends of pulmonary hypertension patients. There are just over 6 days left as of today!

Bid on the Maná guitar

Bayer Reports Positive Data From Riociguata Study

(GEN) - Bayer reported positive data from a Phase III study evaluating riociguat (Bay 63-2521) in patients with inoperable chronic thromboembolic pulmonary hypertension (CTEPH) or with persistent/recurrent pulmonary hypertension (PH) following surgery. Read article

FDA Declines United's Drug Application

(CBS News) - United Therapeutics Corp. said Tuesday that the U.S. Food and Drug Administration declined its application for an extended-release tablet version of its pulmonary arterial hypertension drug treprostinil. Read article

Wednesday, October 24, 2012

Fact of the Week: First Pulmonary Hypertension Case Reported in 1891

Dr. Ernst von Romberg filed the first case report for a patient with pulmonary hypertension, a condition he referred to as "pulmonary vascular sclerosis," in 1891.

View PHA's interactive history timeline

PHers Spread Hope and Awareness Across the East Coast with PHA Signature Fun Walks

Saturday, Oct. 6, marked the beginning of the fall special events season with three PHA Signature Fun Walks that brought together communities along the East Coast to walk for a cure. Crowds gathered in New York, Maryland and Georgia to raise awareness about pulmonary hypertension, as well as funds for research and patient and family-serving programs – laying the foundation for PH Awareness Month this November.

Read more

Tuesday, October 23, 2012

Webinars for Medical Professionals This Coming Week

The following webinars will be taking place on PHA Online University for pulmonary hypertension medical professionals this coming week. Learn more and sign up today!

Working with a Social Worker
Allyson Rupp, LCSW
Oct. 24, 1:30 p.m. ET/10:30 a.m. PT
Register

Caveolin-1 Expression During the Progression of Pulmonary Hypertension
Rajamma Mathew, MD
Oct. 25, 2:00 p.m. ET/11:00 a.m. PT
Register

Understanding Compassion Fatigue
Crystal Weber, RN, Duke University
Nov. 1, 1:00 p.m. ET/10:00 a.m. PT
Register

Subscribe to PHA Daily Beat via Email or RSS

Do you value the information we provide in PHA Daily Beat? Did you know you can subscribe to have the information we post come to you via email or RSS? Sign up on the top right of this page.

Come Out to Good Morning Texas This Friday

 
Calling all Texans! We need you to come on out for Good Morning Texas this Friday morning at 8:15 a.m. in front of the American Airlines Center in Dallas (I-35 South). The show will be promoting the upcoming special event, The Zebra PHriends 5K & 1M PHun Walk, that will be taking place on Nov. 3. Help us raise awareness for pulmonary hypertension.

Monday, October 22, 2012

Ladies Night Out in Waterbury, Conn.

Ladies! Join us for a night on the town on Sunday, Oct. 28 at Elizabeth Richard Gifts in downtown Waterbury, Conn. Get a jump-start on your holiday shopping, and E. R. Gifts will donate 20% of sales from its 'Ladies Night' back to the Pulmonary Hypertension Association. Thanks to PH community member Amy Russo for coordinating!

Learn more and RSVP for Ladies Night Out

Patient Telephone Support Group Meeting Thursday

A support group is only a phone call away. Our patient telephone support group makes it easy to participate regardless of your work hours, distance or health concerns. Join us this Thursday at 8 p.m. ET/5 p.m. PT.

Register for the patient telephone support group meeting

Bayer to Present Data on Investigational Pulmonary Hypertension Compound at CHEST 2012

(Herald Online) - Bayer HealthCare announced today that data on its investigational pulmonary hypertension compound riociguat (BAY 63-2521) will be presented in a scientific forum at the American College of Chest Physicians (ACCP) annual meeting October 20 – 25, in Atlanta, GA.  Data from two pivotal, Phase III trials researching riociguat in patients with for pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) will be presented as late-breaking abstracts in oral presentation sessions. Read article

Actelion Submits a New Drug Application to the FDA for Macitentan (Opsumit) for the Treatment of Patients With Pulmonary Arterial Hypertension

(Reuters) - Actelion today announced that it has submitted a New Drug Application (NDA) to the US Food and Drug Administration (FDA) seeking approval for macitentan (Opsumit®) for the treatment of patients with pulmonary arterial hypertension. Read article

Doctors Hospital's Exercise Tests Athletes, Patients

(The Augusta Chronicle) - Sophisticated new exercise testing equipment at Doctors Hospital will help patients across the fitness spectrum, from top athletes to those struggling to breathe, doctors said. Read article

Giving Kids the Hunt of Their Lives

(Fox 11) - It's hard to be anything but relaxed when you are surrounded by these sounds and sights. One girl from Oshkosh, who is fighting for her life, will take any relaxation she can get. "It's hard to breathe, hard to move around a lot, so hunting is ideal, because normally you're just sitting and waiting," said Emily Phillip, Oshkosh. Emily Phillip, 16, suffers from pulmonary hypertension and has battled a heart defect her entire life.  But on this day, she's not thinking about that. Instead, she's getting ready to go hunting. Read article

Puppy Love for Natalie

(Chorley Guardian) - Man’s best friend is helping a mum recover from a double lung transplant and life-threatening pneumonia. Natalie Kerr, 30, from Adlington, was diagnosed with pulmonary hypertension back in 2008 which meant that she was taking oxygen daily. Doctors claimed that she only had three years to live but luckily in February a matching donor was found.  Now after two months of regular hospital visits she has been ordered home by doctors to relax – with a new puppy! Read article

CPAP for Emergency Management of Congestive Heart Failure Is Rapidly Becoming the New Standard of Care

(EMS1) - The use of continuous positive airway pressure (CPAP) for the emergency management of congestive heart failure (CHF) is rapidly becoming the new standard of care, replacing the traditional approaches of nitrates, diuretics and invasive airway management. As CPAP becomes more commonplace, more uses for the technology have emerged. Read article

Friday, October 19, 2012

Faces of Pulmonary Hypertension: Marla Akins

"After calling around, I found one (a doctor) that could see me the very next week. He said that my symptoms sounded like exercise induced asthma so he prescribed me two inhalers, and we made a follow up appointment in two weeks. After the first week, I felt no relief so I called the doctor and he recommended I inhale more often while running. That did not help, and I informed him at the second visit."

Read more of Marla's story

Thursday, October 18, 2012

PHer Raises Awareness for Healthy Lung Month

October is Healthy Lung Month! Watch pulmonary hypertension patient Erika Walker talk about Healthy Lung Month AND spread PH awareness on her local news program.

"My hope is that I can reach out to someone that may be going through the same thing."

Watch Erika in this news video clip...


Breakthrough Could Help Sufferers of Pulmonary Arterial Hypertension

(The University of Sheffield News) - For the first time scientists have found an antibody treatment that not only stops PAH getting worse, but also reverses the condition in mice and rats. The research was funded by the British Heart Foundation and the Medical Research Council (MRC) and is published in the Journal of Experimental Medicine. Read article

Wednesday, October 17, 2012

Medical Professionals: Working with a Social Worker Webinar Next Week

Medical professionals: Join Allyson Rupp, LCSW, from Stanford Hospitals and Clinics for our PHA Online University webinar next week on working with a social worker.

Working with a Social Worker
Oct. 24, 1:30 p.m. ET/10:30 p.m. PT
PHA Online University webinar

Register for the webinar

Tuesday, October 16, 2012

Join Our Numbers, Join PHA

PHA’s membership is the official number we use when advocating on Capitol Hill and raising awareness in the media. The larger PHA’s membership, the more attention we get! Make sure you’re part of the count!

Join or renew your PHA membership now

Fact of the Week: Pulmonary Hypertension Diagnostic Tests

To determine if you have pulmonary hypertension, your medical team will schedule specialized tests. If your medical team suspects PH as a result of one or more of the tests, they will go on to schedule a right-heart catheterization, which is required to confirm diagnosis of PH. While the right heart catheter is in place, they will perform an acute vasodilator challenge to determine if you might respond favorably to calcium channel blockers and to help determine your prognosis.

You can learn more about the diagnostic tests doctors use to assess if you could have PH and the right-heart catheterization that is used to affirmatively diagnose pulmonary hypertension on PHA's website.

Learn about pulmonary hypertension diagnostic tests

Monday, October 15, 2012

Discuss Barriers to Diagnosis with the NIH Wednesday!

Express your passion about early diagnosis this Wednesday, Oct. 17! Join the National Institutes of Health “Community Input Webinar” for patients. This is an unprecedented opportunity to discuss barriers to diagnosis with leaders of the Office of Rare Diseases Research (ORDR). Your experiences with travelling to see a doctor, access to specialists and insurance reimbursement will help NIH expand the Undiagnosed Diseases Program. Your input will allow the NIH to help more individuals struggling with unexplained symptoms to receive diagnosis by a team of medical experts, potentially expanding medical knowledge.

NIH Undiagnosed Diseases Program Community Input Webinar
Wed., Oct. 17, 2:30-4:00 p.m. ET/11:30 a.m. – 1:00 p.m. PT
Web portion: https://webmeeting.nih.gov/udp-community_input/
Phone dial-in: 1-800-201-2375, Participant Code: 471324

Note: This webinar is not intended to answer diagnostic questions nor to solicit new participants in the Undiagnosed Disease Program. Learn more about the program

Miles for Mallory Fun Walk in Minneapolis Saturday

Twin Cities: Make plans to attend the Miles for Mallory PHamily PHun Walk THIS Saturday Oct. 20 in Minneapolis, where you’ll witness a presentation of the Governor’s Proclamation declaring November 2012 as Pulmonary Hypertension Awareness Month! All proceeds to benefit PHA. Hope to see you there!

Learn more and register

Friday, October 12, 2012

Faces of Pulmonary Hypertension: Barbara Thompson

"My husband took me to 14 different doctors before one of them had the sense to run an echocardiogram. I had been bedridden for almost 2 years."

Read Barbara Thompson's story

Thursday, October 11, 2012

Caregiver Telephone Support Meeting Next Week

Want to talk to someone who gets it? Pulmonary hypertension caregivers, connect toll-free next week on Oct 17.

Connect with the Caregivers Telephone Support Group

New Treatment Target Brings Hope for Scleroderma Patients

(News-Medical.Net) - Research presented at the European Academy of Dermatology and Venereology in Prague, Czech Republic, suggests that inhibition of the SMAD protein may be a viable therapeutic target in scleroderma patients. Read article

Bob Saget Returns To Carolines On Broadway To Benefit Scleroderma Research

(MarketWatch) - Bob Saget will host Cool Comedy - Hot Cuisine, the Scleroderma Research Foundation's (SRF) signature event on Monday, October 22 at Carolines on Broadway. Saget, an SRF Board Member who lost his sister to scleroderma, will be joined in the fundraising effort by comedians Seth Herzog (Late Night with Jimmy Fallon), Seth Meyers (Saturday Night Live), John Oliver (The Daily Show) and Triumph the Insult Comic Dog. Read article

Wednesday, October 10, 2012

Download Free Coping with Pulmonary Hypertension Guides

Learning that you have pulmonary hypertension can turn your whole world upside down. You may experience a variety of emotions. Give yourself the space to feel and respond to your diagnosis without judgement so you can begin to move forward. PHA has developed new resources to help you manage the mental, emotional, social & spiritual side of living with PH.

Download your free Coping with Pulmonary Hypertension guides today!

Fact of the Week: Cost of Pulmonary Hypertension Treatments

Pulmonary hypertension therapies cost upwards of $100,000 per year and many patients are prescribed more than one therapy.

Learn about pulmonary hypertension treatments | View insurance resources

Tuesday, October 9, 2012

Vote for Blue Lips Documentary

A pulmonary hypertension film is a contender in the ArcLight Cinemas documentary contest. The "Blue Lips" documentary was made by PH patient Erica Prieto and is in the short documentaries category toward the bottom.

View documentary and vote by Oct. 14

Join Call on Pediatric Emergencies Next Week

Parents Telephone Support Group
October 18, 2012
8:30 p.m. ET/5:30 p.m. PT


Topic: Emergency Procedures Follow-Up Discussion

The Parents Telephone Support Group hosted a webinar this spring on potential risks for PH kids during emergency medical procedures. Join us for a conversation with other parents to share tips and experiences and discuss follow-up questions you may have.

View the spring webinar and learn how to join next week's call

Monday, October 8, 2012

South Jersey Group Outreaches at Women's Health Conference

Ryan Juntti -- diagnosed 2007 -- and mom/caregiver Bonnie Patricelli participated in the Camden County Women's Health Conference. They’ve been involved in community awareness and have been promoting pulmonary hypertension awareness and education at this event for two years.

More people were interested in the handouts this year, and the information they distributed was diversified this year, such as the handouts about secondary diseases like HIV, liver disease and sickle cell. They were able to talk to several people who needed information on their lung/breathing issues -- they advised them to get on the PHA website. They also spoke to several medical students and nurses who had never heard of PH.

Extra! Extra! Read All About It!

Pulmonary Hypertension Awareness Month is a great hook for sharing your PH story with the media and spreading PH awareness to your entire community. Put the spotlight on pulmonary hypertension this November!

Here are a few resources to help you

Jaxx Denny Home From Hospital After Complications

(digTriad - WFMY News) - After three weeks in Children's Hospital of Philadelphia, Jaxx Denny is finally home. The Reidsville miracle baby had complications after surgery to expand the rods in his back and rib cage. Doctors told Pete and Tammy Denny that Jaxx's August 28, 2012 surgery was a success. However, the right side of his heart became enlarged. Doctors diagnosed Jaxx with pulmonary hypertension. Read article and watch video

Sleep Quality Poor in Patients with COPD

(MedPage Today) - Patients with chronic obstructive pulmonary disease (COPD) are unlikely to get a good night's sleep -- possibly because their blood is oxygen-starved during their waking hours, a secondary analysis found. Read article

Friday, October 5, 2012

Don’t Be a Victim

A couple weeks ago, the North Central Florida Support Group had a meeting about avoiding various types of crime, such as fraud and cyber-crimes called “Don’t Be a Victim.” It was done as part of the Florida “Seniors vs. Crime” Special Project, which can be used for all age groups.

Faces of Pulmonary Hypertension: Joan Godber

Joan Godber's story...

"I had been very gradually getting short of breath for years but had always put it down to the asthma that had been diagnosed in 1990. Doctors had just changed my medication when I complained it wasn’t working like it used to. Boy was I wrong!"

Read full story

Thursday, October 4, 2012

Announcing First Pediatric Pulmonary Hypertension Research Fund

From PHA President Rino Aldrighetti's blog...

On Saturday evening September 22 at about 7:00 p.m. Pacific, Carl Hicks announced that the Robyn Barst Pediatric PH Research and Mentoring Fund reached its $1,000,000 stage 1 goal. The doors for the first ever pediatric research fund for pulmonary hypertension are now opened!

While the goal was reached at the Thirsting for a Cure event in Oregon, it was the culmination of a two year community-wide effort. We owe a great deal of thanks to a great many people.

Read more

Wednesday, October 3, 2012

Q&A: Medicare Part D Online Chat

Gearing up for Open Enrollment: An Online Chat on Medicare Part D
Wednesday, Oct. 10, 2:00 p.m. ET/11:00 a.m. PT


Medicare Part D open enrollment — your opportunity to make changes to your Part D coverage begins October 15. Prepare for open enrollment with PHA’s interactive web chat. Join Amy Jackson of the Caring Voice Coalition and Doug Taylor, a PHA Support Group Leader, for tips on the process — from what to look for in a Part D plan to how to navigate the online plan finder.

Register for the Medicare Part D Online Chat

Fact of the Week: Doctors Who Treat Pulmonary Hypertension

Doctors who treat pulmonary hypertension are PH specialists, and they have focused their practices on the diagnosis and treatment of pulmonary hypertension. PH specialists are typically cardiologists, pulmonologists or rheumatologists who have a special interest in pulmonary hypertension. Nurses, pharmacists and internists can also have special training in pulmonary hypertension.

Pulmonary hypertension is an uncommon but serious disease, and most generalists have little training or experience in PH treatment. Therefore, patients are encouraged to see a PH specialist. These doctors have had extensive training and will provide you with the best care possible.

Tuesday, October 2, 2012

Help Bring Awareness Month to Capitol Hill!

When you invite your senators and representative to PHA’s Congressional Luncheon on Nov. 13, they get a free meal and learn more about what they can do to fight PH. We won’t climb the Capitol steps, but we are climbing toward a cure!

Invite your Members of Congress to PHA's Congressional Luncheon

Monday, October 1, 2012

Let’s Walk for Hope this weekend in New York, Georgia and Maryland!

On Saturday,October 6, the PH community will be gathering in three different locations along the east coast raise PH awareness and funds for research and patient and family serving programs.

The “8th Annual NY Fun Walk for Pulmonary Hypertension” will take place at Fireman’s Memorial Park in Lindenhurst, N.Y.  This year’s event will honor our caregivers, those special people in our lives who share our journey. In addition to the walk, there will be guest speakers, our popular Chinese raffle and food. Read more

The “Baltimore PH Walk for HOPE ” is back and will be held at M&T Bank Stadium, home of the Baltimore Ravens. This day of inspiration and awareness will include speaker presentations from leading PH specialists, Rino Aldrighetti and PH patient, Nicole Cooper. Read more

The “9th Annual Georgia PHA Fun Walk for a Cure” will be held at East Cobb Park in Marietta, Georgia. This event will feature a one-mile walk around the park, lunch, a raffle and a silent auction. Read more

Hope to see you at one of these events!