Busy day in Greater Washington...

Today was supposed to be a big ice storm in Washington DC...but the temperature held above freezing because we had a lot going on outside the office.

At an 8:00am breakfast in Bethesda, Maryland I had a chance to introduce Candice Abate, our new VP for Medical Services & Patient Education to PHA Board Chair, Laura D'Anna.  Laura was in town for an NIH meeting.

After that, I headed up the road to Congressman Chris Van Hollen's office in Rockville.

He is our local Member of Congress and PHA volunteer Conchita Watson had written him a letter during November Awareness Month telling him she wanted to talk to him about PH...and received an invitation in response.  The rest of our group was her friend and fellow patient, Georgia M., PHA's Advocacy and Awareness Director, Katie Kroner, our Washington rep, Gavin Lindberg and me.  It was a great meeting with Conchita and Georgia telling our Congressman what it is like to live with PH.  He was very interested in learning about the disease and we were able to give him a lot of information.   Our big issue was the reintroduction of our bill in the House and Senate (Katie and Gavin have been working with Senator Casey and Rep. Brady and others on that).  After we spoke, he told us he had read the bill and was glad to co-sponsor and would help to move it along! We will be following with his staff on that and another issue.

While that was going on, Debbie and Dr. Steve Mathai from Johns Hopkins were across the District line to do their interview on the show I blogged about yeasterday.  I was able to listen to the Kojo Nnamdi Show...and you can, too!  Once you click the link to the show's page, drag the white time line on the black bar to 24:33 to catch the start of the segment.

They were a great team, joined by Dr. Gregory Kato from NIH.  Many thanks for helping to expand awareness of this disease. 

...And what a relief we didn't have to cancel all this for ice!

Debbie, Dr. Mathai and Kojo...

First it was PHA board member Steve White, Generation Hope leader Coleen Brunetti and Yale's Dr. Terrence Trow, now PHA's own Director of Volunteer Services, Debbie Castro and Johns Hopkins physician and PHA research award grantee, Dr. Stephen Mathai are hitting the NPR airwaves.

Here are the details about tomorrow's show...

The Pulmonary Hypertension Association will be on the Kojo Nnamdi Show, a local D.C.-area National Public Radio (NPR) program, on Wednesday, February 2 at 1 p.m. ET. If you are local you can listen on the radio at 88.5, otherwise listen online at www.WAMU.org. With 700,000 listeners, the show will help us raise awareness about the disease and PHA's work with the PH community. They are dedicating the entire show to pulmonary hypertension, and the program includes a listener call-in segment, so get your questions and comments ready!


Show Details

Kojo Nnamdi Show

Wednesday, February 2

1:00 p.m. ET (will probably begin around 1:15 p.m. ET)

Listen: WAMU, 88.5 OR www.WAMU.org

Panel: PHA staff member Debbie Castro, PH specialist Dr. Stephen Mathai from Johns Hopkins, and Dr. Gregory Kato of the National Heart Lung and Blood Institute

Includes a listener call-in segment: 800-433-8850; anyone can listen and call in

Our partners in Brazil...

PHA's Director of Volunteer Services, Debbie Castro, spent the Thanksgiving weekend in Sao Paolo, Brazil.

She had been invited to speak at the third annual conference of the Associação Brasileira de Amigos e Familiares de Portadores de Hipertensão Arterial Pulmonar (ABRAF), one of 50 PH associations PHA works with worldwide. 

Here is Debbies first report about her experience:

There are about 55 people here at the Third annual meeting of ABRAF.

 For a patient to get on treatment in most states of Brazil, they must take legal action and sue the state to pay for treatment. 25 of 27 states don't recognize PH in their treatment protocols.

Paula Menzes lost her mom to PH and founded the organization 4 years ago. Debbie reported that Paula's father, Paulo, was an excellent MC for the event. They both speak English, Spanish and Portuguese.  That's Debbie on the left, Paulo in the center and Paula oon the right.

We value this and all our international partnerships in the fight against PH...and we're looking forward to hearing more when Debbie gets back!

New name, same great program...

A number of years ago, I heard a story that instantly helped me understand the importance of PHA's Patient to Patient Helpline.

One night, a young woman called 800-748-7274.  She was with her father in the parking lot of her doctor's office.  They had just left the doctor's office where she had been given a diagnosis: pulmonary hypertension.  The doctor told her she had a year to live and gave her a PHA brochure. Devastated, she called the Helpline number listed there. 

The volunteer who picked up the phone was Dorothy Olson.  After listening to the young woman's story, Dorothy said,                   
                 It's not over.  I have been living with this disease for over 25 years.

...and everything changed.

Today, Debbie Castro, PHA's Director of Volunteer Services, asked our staff to start circulating some important news.

Here it is...

PHA’s Patient-to-Patient Support Line is a new name for one of our very first patient services. Formerly known as the “Helpline,” we’ve renamed it to highlight one of the biggest benefits of this service: immediate connection with another patient. Our Support Line volunteers also provide information, like the contact point of a nearby PH clinician or support group, but we really want patients and caregivers to know that a PHriend is always a phone call away.

800-748-7274

Need to talk to another patient about anything and there’s no support group nearby or the next meeting is several weeks away? Are you a caregiver that needs information and support? No internet access to our Discussion Boards or online chats? No problem—you can always dial our Support Line to talk to another patient right away.