Pulmonary Hypertension Association (PHA) Hosting World’s Largest Gathering of PH Patients, Medical Experts and Scientists

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The Pulmonary Hypertension Association (PHA)’s unique international conference June 17-19 at the Omni Dallas Hotel downtown will be the world’s largest gathering of pulmonary hypertension (PH) patients, their loved ones and medical professionals who specialize in the rare disease.

Pulmonary Hypertension Association Pioneers

PHA's "Periwinkle Pioneers"

The 12th International PH Conference and Scientific Sessions will draw more than 1600 people from around the world.

The Pulmonary Hypertension Association (PHA)’s unique international conference June 17-19 at the Omni Dallas Hotel downtown will be the world’s largest gathering of pulmonary hypertension (PH) patients, their loved ones and medical professionals who specialize in the rare disease. The 12th International PH Conference and Scientific Sessions will draw more than 1600 people from around the world.

PH is a progressive disease that puts pressure on the right side of the heart and can cause death from heart failure. With symptoms that include shortness of breath, fatigue and chest pain, PH often looks like asthma or other less-threatening illnesses. Without treatment, median patient survival for those with pulmonary arterial hypertension, one form of PH, is only 2.8 years from the time of diagnosis.

PHA combats PH, or high blood pressure of the lungs, with integrated support, education and awareness programs for patients, caregivers and families and the medical and scientific community. The Dallas conference marks PHA’s 25th anniversary and comes on the heels of news of the national nonprofit’s four-star rating from Charity Navigator, which places it in the top half of one percent of the more than 8,000 charities evaluated.

Conference sponsors at the Diamond (highest) level include Actelion, Bayer HealthCare and Gilead Sciences. Silver-level sponsors include United Therapeutics, Reata and Accredo. SteadyMed Therapeutics is a Bronze sponsor and Bellerophon Therapeutics and Eiger are general sponsors.

Highlights of the conference include:

International Leaders’ Summit: June 16 (pre-conference event), 10 a.m. – 4:15 p.m.
Founders and leaders representing associations serving PH communities in more than 40 nations will meet for PH education and networking opportunities. Many of these leaders are touched by PH, either firsthand as patients or through medical and family connections and/or the loss of loved ones due to the disease.

Research Room: June 17, 8 a.m. – 5 p.m.; June 18, 8 a.m. – 6 p.m.; June 19, 8 a.m. – 10 a.m.
People living with PH will support ten research projects through participation in the 2016 PHA Research Room. Participation involves answering questions and having blood drawn. PHA’s first International Conference Research Room in Atlanta, Ga., in 1994 resulted in the largest single blood draw from PH patients to that date and helped identify the PH familial gene (BMPR2).

Young Survivors Pay Tribute to PHA’s Periwinkle Pioneers: June 17, 1 p.m. – 2 p.m.
Shelby Anders, Emily Stibbs and Monica Penaranda will tell inspiring stories that span PHA’s 25-year history about their experiences living with and, in one case, conquering PH. The survivors’ stories will serve as an introduction to their delivery of “The Periwinkle Pioneers,” a storybook tribute to the people whose contributions made PHA possible. Anders lived with PH until a double lung transplant cured him of the disease in 2014, three years after his college graduation. Stibbs, grew up with PH and has benefitted from a number advances in care. She leads a successful life at a public relations firm and looks forward to her future. Penaranda, who was diagnosed as a teenager, is living her dream of being a wife and mom after marrying a widower with three children.

Periwinkle Carpet with Celebrity Ambassador Terrence J: June 17, 6:45 p.m. – 7 p.m.
PH patients will walk the periwinkle (symbolic of PH) carpet with celebrity ambassador Terrence J. Terrence J began serving as PHA’s celebrity ambassador early this year after learning that Natalie Cole died of PAH. He also met a PH survivor and PHA Board Chair Steve White, who lost his daughter to the disease. Terrence J is an actor and the host of the new Mark Burnett reality series, "Coupled". He got his start on BET’s "106 & Park" and went onto host "E! News" with Giuliana Rancic. Terrence J’s movie credits include "Think Like a Man" and "The Perfect Match." To request a one-on-one interview with Terrence J., contact Kelly Williams at kellyw@PHAssociation.org by noon, June 16.

25 Years of PH Medicine and its Future Conference Opening Dinner: June 17, 7 p.m. – 8:30 p.m.
PH patients, caregivers and families, medical professionals and researchers will gather for the first formal meal of the conference. Celebrity ambassador Terrence J will help welcome the group.

Launch of Music Video Featuring Kids living with PH: Saturday, June 18, 12:15 p.m. – 1:15 p.m.
This luncheon is an opportunity to hear stories of courageous people living with PH. It will also serve as the official launch of a new music video featuring YouTube sensation Chloe Temtchine. Celebrity ambassador Terrence J. will play a role in the launch during the luncheon. Living with PH herself, Temtchine uses her musical talents to raise money for PHA. During the luncheon, the new video for her single, “Breathe,” will play for the first time publicly as it goes viral to launch a text-to-give (Text “PHA” to 56512) fundraiser with all proceeds going to PHA. Temtchine, a vocalist who also plays guitar and piano, performs with her portable oxygen canister, which she lovingly calls Steve Martin. Just as lunch guests see the video, it will begin to appear on social media timelines around the world. Anyone can be part of the wave of support by visiting https://www.thunderclap.it/projects/42726-pledge-to-breathe-on-june-18th.

Being PHashionable: Saturday, June 18, 4:30 p.m. – 5:30 p.m.
Adult and child models living with PH walk in this special fashion show to demonstrate how their personal style is uncompromised by their infusion pumps and tubes or portable oxygen canisters.

PHA’s first leadership transition in its 25-year history: Saturday, June 18, 7 p.m. – 8:30 p.m.
Rino Aldrighetti, PHA’s first president and CEO, will reflect on his time at PHA. Aldrighetti’s retirement, effective June 18, follows a 17-year career at PHA, where he was the association’s first paid staffer. Throughout the conference, the world PH community will meet PHA’s new president and CEO Brad A. Wong. Wong comes to PHA from the Foundation of the American Academy of Ophthalmology, where he served as executive director. His accomplishments include creating innovative programs, raising the foundation’s visibility, establishing strategic partnerships, and increasing and diversifying funding. Wong also brings broad knowledge of academic medicine and biomedical research environments, having served as assistant vice president of the University of California, San Francisco (UCSF) Foundation.

About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., with a growing list of chapters across the country, the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. Its mission is to extend and improve the lives of those affected by PH; its vision is a world without PH, empowered by hope. PHA achieves this by connecting and working together with the entire PH community of patients, families and medical professionals. Among its programs, PHA facilitates more than 245 support groups around the country and delivers continuing education for medical professionals through PHA Online University. For 13 consecutive years, PHA has received the highest rating — four stars — for financial health and fiscal accountability & transparency from Charity Navigator, placing it in the top half of one percent of all rated charities. For more information, please go to http://www.PHAssociation.org, @PHAssociation on Twitter and http://www.facebook.com/PulmonaryHypertensionAssociation on Facebook.

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Kelly Williams
since: 09/2009
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