Monday, October 5, 2015

Oxygen? Check. Guitar? Check. Food Truck? Check! Raising Awareness for PH? Check.

Today was Chloe Temtchine's first in a series of four 2015 Breathe Food Truck and Music Concerts that will be held in New York City throughout October. Today’s performance took place from 12:00 p.m. to 3:00 p.m. at 47th Street between Lexington and Park Avenues. The concert also featured free lunch for up to 50 lucky and hungry attendees, thanks to Korilla BBQ. Also big thanks to the PHA NY-Philly Chapter, Bayer and Actelion Pharmaceuticals Ltd for their work and support! Learn more.
The next concerts in this series will be held:
  • Wednesday, Oct. 14, 2015, Financial District: Front & Old Slip
  • Thursday, Oct. 22, 2015, Midtown: 55th & Broadway
  • Friday, Oct. 23, 2015, Brooklyn: TBD

Wednesday, September 30, 2015

This October PHA Staff Run for the Cause

Two PHA staff members – Olivia Onyeador and Jessica Armstrong – are running for the cause this October as members of PHA's Team O2 breathe. Olivia, PHA’s PHCC Program Manager, will participate in the Bank of  America Chicago Marathon on Oct. 11, and Jessica Armstrong, PHA’s Early Diagnosis Campaign Manager, will run in the 2015 Rock ‘n’ Roll Half Marathon in Philadelphia, Pa., this Halloween.

Olivia Onyeador, PHCC Program Manager
Olivia has always been a fighter. After sustaining multiple sports-related knee injuries, she has worked hard to get back to a healthy state: “In 2008, after my second (of three) knee surgeries, the doctors told me I might not be able to walk or have feeling in my right leg again because the nerve damage was so extensive.” After months of rehabilitation, she regained control of her leg and was eventually able to complete a half marathon a few years later.

When Olivia learned about Team O2 breathe’s participation in the Bank of America Chicago Marathon, she believed that this event would be “the perfect chance to help the PH community through direct fundraising as well as my own physical efforts in a larger scale endurance event.” Team O2 breathe allows members of the PH community to participate in endurance events, such as a 5K, swim, triathlon, or one of the “charity partner events,” to raise funds and awareness for PH. 

In preparation for the October race, Olivia often thinks of the strength of those she is helping at PHA. “Their drive embodies something a past sports coach (Brian Pensky, head coach of University of Tennessee Women’s Soccer) said to my team: ‘You are a part of something bigger than yourself.’ That mirrors my exact sentiments about PHA and the community we serve,” Olivia says. “The people surrounding me encourage me to push the limits because they never stop striving to surpass their own. I am doing this because PH patients have taught me what it means to be resilient.”

Visit Olivia’s fundraising page.

Jessica Armstrong, Early Diagnosis Campaign Manager

Jessica Armstrong is often the person at PHA who a patient or caregiver will speak with when they are first diagnosed. Her calm and bright personality helps those who are seeking answers throughout this difficult moment in their lives. They rely on her as being both knowledgeable and understanding, mostly because she was sitting in their position almost four years ago.

Jessica was diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) in 2011, on Halloween. As the four-year anniversary of her diagnosis approaches, she is planning to run in the 2015 Rock ‘n’ Roll Half Marathon this Halloween. She will be running and fundraising for PHA and will be educating others about CTEPH Awareness Day, which will take place on Tuesday, Nov. 17, 2015.

“Every day I work to reduce the knowledge gaps and the barriers contributing to the high rate of missed and delayed diagnoses,” Jessica says. To learn more about CTEPH Awareness Day, visit

Visit Jessica’s fundraising page.

To learn more about PHA’s Team O2 breathe or to become part of the team, visit To find out more about fundraising for the PH cause, contact

Tuesday, September 29, 2015

New Jersey Boy with PH Receives Pope’s Special Blessing at Philadelphia Mass

After watching Pope Francis kiss their 9-year-old son, Daniel, on the forehead and give him a blessing, Carlos Torres and Martha Gonzalez of North Bergen, New Jersey, are more hopeful than ever in their fight against pulmonary hypertension (PH). Daniel, diagnosed with PH shortly after his birth, sat in the front row at the Pope’s mass at the Philadelphia Cathedral. His 8-year-old sister, Mia, who attended the mass with her big brother, handed the Pope a letter that included the names of many very sick PH patients asking the Pope to cure the disease. “Take this list,” said Mia. “Pray for all these people.”

Daniel’s interest in God compelled his mother to write the Archdiocese of Philadelphia about her son’s PH journey. She sent a copy of the letter to the Vatican with a request that Pope Francis bless Daniel during his visit to Philadelphia. A week later, Daniel and his family received first- row passes to attend the Papal mass at the Philadelphia Cathedral.

“From that day I’ve learned to always try to get what you need. You never know. For us, Pope Francis’s blessing is a need not a want,” Gonzalez said.

Since Daniel’s diagnosis shortly after his birth, his family has been active members of PHA, the country’s only comprehensive PH nonprofit, which for 12 consecutive years has received Charity Navigator's top rating -- four stars -- for fiscal accountability and transparency. PHA provides support for patients and caregivers; medical education; advocacy and awareness resources; and funding for research to find ways to prevent and cure PH. Gonzalez has been involved in advocacy, fighting for the Pulmonary Hypertension Research and Diagnosis Act, which would create an interagency coordinating committee and better access to care. She is especially active in advocating for the Spanish-speaking PH community. She is one of four people behind, a Spanish- and Portuguese-language web site for the international PH community.

Daniel’s life started with open heart surgery and he was diagnosed with pulmonary arterial hypertension at barely a year old. Thanks to the early diagnosis of the disease, Daniel’s treatments have helped the now fourth grader thrive, in spite of the disease.

“My daughter Mia’s wish is a miracle for her brother so he can stop having the subcutaneous site on his arm,” Gonzalez said. “But Daniel loves his site because it gives him his medicine. Hearing him say that makes me realize that being sick is his “normal.” This encourages me to continue pursuing a PH cure through awareness so my son, like many other patients, can enjoy life being healthy again.”

Check Out Our PH Library and Join a PH Experts Twitter Chat

Our PH Library is a website that provides information and a library of more than 200 high-quality resources developed by pulmonary hypertension patient groups around the world. The library includes an easy search function that enables users to search for resources on specific topics related to the disease and find relevant materials. This website was developed by PHA Europe with an educational grant from Actelion Pharmaceuticals Ltd.

On Monday, Oct. 12, at 12:30 p.m. ET, join the PH community for a live Tweet Chat with PH experts to discuss topics in PH and celebrate the launch of Our PH Library. Search or tweet #PHLibrary to join the chat and follow @PHAssociation or @EuropePHA for more information.

Wednesday, September 23, 2015

PH Patients Among Those with Pacing Parson for Final Yards of His Cross-Country Walk for PHA

(L-R) PHA Executive Vice President Carl Hicks, Don's wife Loretta Stevenson,
Don "Pacing Parson" Stevenson and PHA President & CEO Rino Aldrighetti
Ahead of his 80th birthday, Don Stevenson (AKA the Pacing Parson), a Seattle-area (Auburn, Wash.) retired minister and former U.S. Marine, has just completed a four-month, 3,000-mile cross-country walk, raising awareness and, so far, nearly $10,000 in donations and pledges for the Pulmonary Hypertension Association (PHA).

On Wednesday, Sept. 23, joined by PHA support group patients and caregivers, Stevenson walked the final yards of his 3,000-mile cross-country journey. The end of the walk was Stevenson’s slowest, as he was joined by the PHA community, including PH patients, who struggle to breathe without portable oxygen or daily medication to get around and for whom even short walks can be laboring.

PHA Staff give Don and Loretta Stevenson a standing ovation for their work.
Press coverage of Stevenson's walk has educated more people about PH, or high blood pressure in the arteries of the lungs, a debilitating disease that affects the functioning of the heart and can lead to death from heart failure. He hopes more people know that there is no cure and PH, while progressive, is often misdiagnosed as asthma or other less life-threatening diseases. Without treatment, the average survival rate is 2.8 years after diagnosis.

Stevenson and the PHA group crossed a periwinkle finish line, symbolic of the color of the lips of some PH patients when they lack oxygen. Periwinkle also represents hope and empowerment to the PHA community.

PHA Staff and PH community members walk
the final steps with the Pacing Parson.
"We are both humbled and empowered by what the Pacing Parson has done to help PHA provide support for patients, caregivers, healthcare professionals and researchers in our collective fight against PH," said Rino Aldrighetti, PHA's president and CEO, at a short finish-line presentation. "PHA, which for 12 consecutive years has received Charity Navigator's top rating -- four stars -- for fiscal accountability and transparency, will celebrate our PH successes as part of PH Awareness Month in November and our 25th anniversary in 2016. We invite the public to support Stevenson's dedication to PHA's cause with a donation."

The Pacing Parson reaches the periwinkle finish line.
The Pacing Parson’s victory reception was sponsored by PHA corporate partners Actelion, Bayer, and United Therapeutics and Lung Biotechnology. Other PHA corporate-partner support for the Pacing Parson’s charity walk included social media and marketing support from Gilead and Reata. Employees from PHA, Actelion, Bayer and Gilead joined Stevenson as he passed through their cities and towns across the country.

PHPN Members Walk to Benefit PH Patients

PHA President Rino Aldrighetti (right) and Symposium
Planning Committee Chair, Fran Rogers, MSN, CRNP
PHA hosted its first PHPN Networking Fun Walk on Friday, Sept. 18, as part of the 2015 PHPN Symposium. The walk drew more than 200 registrants and raised money for patient scholarships for PHA’s 2016 International PH Conference and Scientific Sessions.

In an effort to bring a new spin to this year’s Symposium, the Symposium Committee planned a walk to promote pulmonary hypertension awareness, raise funds and involve the healthcare professionals who care for so many PH patients each year. The PHPN Fun Walk brought together nurses, nurse practitioners, physician assistants, pharmacists, respiratory therapists, social workers, physicians and other non-physician clinicians, as well as many of PHA’s corporate partners and staff.

Fran Rodgers, MSN, CRNP, PHPN Symposium Committee Chair, spoke to the importance of helping PH patients. She explained, “We come to Symposium every other year to learn what’s on the cutting edge of PH so we can better care for our patients. Through the money we raise at our very first fun walk, we hope to provide Conference scholarships for our patients so they, too, can learn what’s on the cutting edge of PH, allowing them to better care for themselves.” She added, “We truly hope this is the start of something big!”

PHA is dedicated to providing valuable education and resources to the PH community. One of the best resources to PH patients has been the International PH Conference and Scientific Sessions, which has given patients access to information and medical resources. With the Symposium’s support towards patient scholarships, PH education for our community grows.

The Conference Scholarship program is a fund specifically created to assist in minimizing expenses for patients and caregivers in need of financial aid. Those who cannot afford to attend miss experiencing great peer-to-peer networking, support and education. Without a scholarship, some patients are unable to attend. PHA is dedicated to helping to bring PH patients together for a chance to learn, network and be empowered by others within the PH community.

For more information about the 2016 International PH Conference and Scientific Sessions, please visit For more photos from the walk, search for #PHPN2015 on Facebook, Instagram or Twitter.

Team PHenomenal Hope Members Help Kick Off 2015 PHPN Symposium

Team PHenomenal Hope members Dr. Patricia George and Anne-Marie Alderson were keynote speakers at the 2015 PHPN Symposium Opening Dinner on the evening of Thursday, Sept. 17. They spoke about how they have taken competitive bike racing to the next level by using it as an opportunity to raise PH awareness. And they also spoke about the importance of teamwork, partnership and preparing for unexpected obstacles. These were themes that very easily translate to the healthcare professionals who made up the audience. 

Over the last few years, Team PHenomenal Hope has played a major role in raising funds and awareness for pulmonary hypertension – and the ultra-endurance team shows no sign of slowing down anytime soon. If team members aren’t racing, they’re training and preparing for the next race while also heavily promoting the PH cause.

Just last month, Dr. George, a pulmonologist at University of Pittsburgh Medical Center (UPMC), took her bike across the Atlantic and competed in the Paris-Brest-Paris bike race - a 764-mile roundtrip course from Paris, France, to Brest, France, and then back to Paris.

When Team PH formed several years ago, they were partly inspired by Dr. Robert Frantz; Jessica Lazar, PA; and Dr. Raymond Benza and the trio's 2010 trek up Mt. Kilimanjaro to raise funds and awareness of PH. Team PH decided to do similar awareness and fund raising when they took on the Race Across America (RAAM) in 2014. RAAM, which is a 3,000-mile bike race from Oceanside, Calif., to Annapolis, Md., is longer than the Tour De France and considered to be one of the toughest bike races in the world. Dr. George and Alderson, along with their two teammates Ryanne “Ryo” Palermo and Stacie Truszkowski, two back-up racers, and countless crew members, succeeded in completing the race in seven days, seven hours and 15 minutes.

Once the momentum began, Team PH could not stop with just one race. They have grown into a team of both men and women competing in endurance events across the country and around the world. This past June, Dr. George and Alderson took on the Race Across the West. This shorter, but still very challenging race, took the two from Oceanside, Calif., to Durango, Colo.