The Pulmonary Hypertension Association’s motto is Empowered by hope, a brief summation that speaks volumes. It says that, while they do indeed help thousands of patients with Pulmonary Hypertension, thereby making them powerful, they are fueled by the hope that their patients exude. It is their patient community that motivates them to do what they’ve done for more than 20 years. Hope, through help.
PHA’s mission is to find methods to prevent and cure Pulmonary Hypertension (PH), and to also provide for the PH community through support, education, advocacy and awareness. An arduous undertaking, considering that there are currently upwards of 30,000 Americans living with PH today.
Our community is a huge tent for anyone affected by the disease.
Soon after Dorothy Olson was diagnosed with PH and given two years to live, she was discouraged yet determined. Inspiration paved way. She was connected with Teresa Knazik, a fellow PH patient. Letters were written, pen-pal groups were formed – an organization was shaped. And soon after Olson, Knazik, Pat Paton and Judy Simpson sat around a Florida kitchen table to share everything they knew about PH, the Pulmonary Hypertension Association was born.
“From our earliest days, PHA has provided opportunities for support and connection, patient (and now medical) education, and integration of medical professionals into our organization,” said Debbie Castro, Volunteer Service Director for the Pulmonary Hypertension Association, and Adrienne Dern, PHA Vice President.
What makes PHA so innovative, Castro and Dern said, is their ability to connect patients with caregivers and medical professionals alike. PHA currently hosts more than 235 support groups across the country, bringing people together to support a shared cause.
“Our community is a huge tent for anyone affected by the disease,” Castro and Dern said. “[PHA] creates a strategic alliance between the families affected by the disease and the medical professionals who treat them.”
Although PHA started out as a single support group, the internet has allowed them to broaden their scope. In addition to increasing the amount of services to its core constituencies, PHA has implanted a number of online communities to help them reach more people.
“We have numerous online communities,” Castro and Dern said. “Including e-mail groups, a message board, daily online chats, and our latest offering – PH E-mail Mentors, which enable patients and caregivers to find someone like themselves and engage in a one-on-one e-mail relationship.”
In 2009, PHA moved away from its “one size fits all” programming and developed targeted programs for specific patient groups, a shift that PHA said has significantly enhanced what they can offer to their patients.
Today, PHA, at the helm of President and CEO Rino Aldrighetti, prides themselves on bringing people together. Whether it’s through an online chat or a kitchen table discussion, PHA, as their website states, turns strangers into friends.
“We have stayed true to our roots,” Castro and Dern said. “[We’ve] continued – but not altered – the vision and ingenuity of our founders. Just as they did then, we work every day to end isolation and seek a cure for Pulmonary Hypertension. So while the scale and scope have greatly expanded, we continue to follow their lead.”Posted in Diseases, Featured, Media Center | Tagged Advice, Aid, Community, Help, Pulmonary Hypertension Association, Support | 2 Comments December 12, 2011
I began my career as a simple beat cop, working the neighborhoods of Brooklyn. I was fresh out of the Police Academy and proud of my role. After a few years on the streets I was promoted to the Narcotics Unit, and it is here that I found my true calling. I would investigate, follow leads, and spent much of my time undercover, setting up and making drug buys. As an undercover officer, I grew, I flourished, and I was eventually promoted to Detective.
I was in between operations, and my Sergeant asked me to take a day and work an
election poll. They were holding local office primaries all over the city. It would put
me back in a uniform, and as it had been a few years since I had put on my blues, I
had to buy a new uniform that actually fit!
I awoke the morning of the elections and got into my new uniform. After a quick
trip to my office in Lower Manhattan, I jumped into my unit and headed Uptown to
work my detail. It was a beautiful morning. It was September 11, 2001.
I was inside the polling site and began to hear the first reports crackling over my
radio of an aircraft that had hit one of the Towers of the World Trade Center. Within
the first few minutes I could hear the sirens, as every emergency unit in the city
seemed to head downtown. People coming in for the elections were starting to hear
the news. I then heard over my radio that a second plane had hit the Towers. How
could this be? I was anxious to hear from my command.
After what seemed like days, a report came in that a Tower had collapsed. My
Sergeant finally told me to close down the poll, and get back to Lower Manhattan,
ASAP. As I made my way back to my Precinct I could see the dark cloud of smoke
and debris building over the island.
I was assigned to the World Trade Center to help evacuate the city, and after helping
secure the site, I was tasked with search operations. I would spend the next three
months, 16 hours a day, helping to guard the site and sift through debris. In the
evenings as the sun would set I could look through the remains of the World Trade
Center and see the light filtering through the haze of dust and brilliant crystals of
I began to work at the landfill in Staten Island where they were taking the debris, sifting
through to search for remains. I worked between the landfill and Ground Zero well
into 2002, never protected with anything more than a paper surgical mask.
I eventually went back to my normal duties, but as the years moved on I began to feel sluggish, I would tire easily, and I began to have difficulty breathing. I developed a loud cough that I couldn’t seem to get rid of. My normal routine became a daily challenge. I would get ready for work, head out the door, and have to grab a wall as I struggled to catch my breath.
My symptoms slowly worsened and I was eventually hospitalized. It was there
that I was diagnosed with Pulmonary Hypertension. It made sense, but they didn’t
explain the extent of the disease or how fatal it could be.
I’ve had to move to a restricted duty, and I’m now a liaison officer for The Missing
Person’s Squad of the NYC Medical Examiner’s Office. My PH may eventually force
me into retirement.
When I was first diagnosed, I was overwhelmed as I struggled to receive the care
and the medications that I needed. I worried every night about my future with the
Department, my health, and then I found out that my medication wasn’t covered by
my insurance. I’ve been a cop for over 20 years, but on a cop’s salary there wasn’t
any way for me to afford the cost of these medicines by myself.
It was a great relief and comfort to receive a phone call from Caring Voice Coalition.
A wonderful woman on the other end of the phone explained who they were and
how they could help. She asked about my diagnosis, asked about my health, and
then gathered some information to fill out some paperwork. With CVC’s help I’ve
been able to continue a regular regimen of medications and receive therapy for my
I’m not 100 percent yet, but things are looking better. I can get up the stairs without
resting, I walk around my neighborhood, and I even get out and play a round of golf
every once in a while. I’ve learned to appreciate these little things that I had started
to take for granted. My last echocardiogram even came back normal!
I’ll be forever grateful for the support of CVC and their team of caring voices. After
seeing the worst on 9/11, and feeling the worst before my diagnosis, and fearing the
worst after hearing the news, I once again have a quality of life. I may never walk a
beat again, but every day I wake up and I walk, and every day my heart still beats.