11th Annual Long Island Fun Walk & Family Day
Saturday, Oct. 10, 2015
Lindenhurst, N.Y.
PHA Daily Beat is going offline in November 2015! Please visit our new PHANews.org website and subscribe to the weekly PHANews e-newsletter there for all the latest news, events and public awareness information about pulmonary hypertension and the PHA community. Thanks for your support!
Wednesday, October 7, 2015
11th Annual Long Island Fun Walk & Family Day
Tuesday, October 6, 2015
Four Stories of the Heart
Diane Ramirez, PH Patient for 28 Years, Begins 30-Day, 75-Mile Walk for a Cure
Twenty-eight years ago, doctors diagnosed Ramirez, now 52, with pulmonary hypertension (PH), high blood pressure in the arteries of the lungs, an incurable disease that can lead to death from right heart failure. She recalls a doctor telling her she would never have children (women with PH have a high risk of morbidity and mortality during pregnancy) and that she should get her affairs in order. At the time, with no treatments and little hope for survival beyond perhaps a heart and lung transplant, doctors gave her less than two years to live. Read more.
Monday, October 5, 2015
Oxygen? Check. Guitar? Check. Food Truck? Check! Raising Awareness for PH? Check.
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.”
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 www.PHAssociation.org/AwarenessMonth/CTEPHDay.
To learn more about PHA’s Team O2 breathe or to become part of the team, visit www.PHAssociation.org/TeamO2breathe. To find out more about fundraising for the PH cause, contact SpecialEvents@PHAssociation.org.
Olivia Onyeador, PHCC Program Manager
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 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 www.PHAssociation.org/AwarenessMonth/CTEPHDay.
Visit Jessica’s fundraising page.
To learn more about PHA’s Team O2 breathe or to become part of the team, visit www.PHAssociation.org/TeamO2breathe. To find out more about fundraising for the PH cause, contact SpecialEvents@PHAssociation.org.
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 www.hpaqui.com, 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.”
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 www.hpaqui.com, 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.
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