We will miss you, Lynda...

John McInnis, a PHA Mentor, wrote to PHA staffer Emma Bonanomi Sunday night with the very sad news of his wife, Lynda Lynda Bériault's passing.  Lynda organized the first Quebec support group and was a founding director of PHA Canada and a dedicated advocate for PH patients in Canada, the U.S. and beyond. She was a friend and we will miss her.


John's note is today's blog...followed by Lynda's appearance (1:45 seconds in) on a video from  our 2006 Conference and a 2004 video in which Lynda and her doctor, David Langleben talk about her/their journey with PH.


Hello Emma,

Last Thursday, my wife, Lynda Bériault passed away quietly during the evening. Lynda was surrounded by all her family and suffered no pain. My son Matthew and I were able to say all we had to before she left and we spent the entire day chatting with her about the wonderful things we did together. Lynda was an accomplished woman to overcame her illness to start the first Quebec PH support group – all on her own. Lynda was also a founding director of PHA Canada and spoke with other PH support groups in Canada, the US and Internationally. She was a champion of PH patients rights, her cherished French language and all those who could not speak for themselves. I know she touched many lives and helped many families during her life as both a teacher and a PH support leader. The stories I will eventually tell all those who are interested, are inspirational and touching, human. She will be greatly missed and I know she is watching over all of her family, friends and the PH community.


John McInnis

Lynda (1 minute 45 sec. in) at PHA's 2006 Conference...



Lynda at PHA's 2004 International Conference with her physician, Dr. David Langleben.

The Blue Lips Disease...

When I began work as PHA's first staff person in 1999, one of the first things I saw was our purple ribbons.  Bonnie Dukart told me that purple - or periwinkle, to be exact - had been chosen because it represented the color that could be seen on some patients' lips...a color caused by oxygen deprivation.

More recently, our friends at PHA in the United Kingdom, decided to turn this reality into global awareness of PH.  They proposed a Pucker Up for PH Campaign to break the world record for kisses collected through the Guinness Book of World Records.

PH associations throughout the world jumped in and collected kisses...and, as they did, told the story of "The Blue Lips Disease".  Here, in the U.S. for well over a year, kiss collection became a fixture at PHA special events and in many other places.

We learned on February 18, 2011 that, working together, the global PH community had shattered the old record of 39,547 kisses - a record that had stood for 10 years. The PH community's new record is 54,949 kisses...and a whole lot of PH awareness...and, perhaps, a new way to describe this disease to a more interested world.

The fun (and valuable) video below from our St. Louis support group members is one of my favorites on this subject.  I hope you enjoy it, too!  Oh, and don't miss Patty Kaiser's story on how she got this media interest.  You can find it on her February 23 posting on PHA's Support Group Blog and another great web video featuring the St. Louis lips!


 

Holding true...

Are we who we started out to be?

Here - in its entirety - is the lead article from the third issue of Pathlight, published in November of 1990.  It was written by PHA co-founder Teresa Knazik and appeared under the title, Pathlight Grows...but it was about a lot more than that.  See what you think.

Welcome newcomers.  We now have 35 members and anticipate many more in the coming months. Over 100 copies of Issue #3 have been mailed, and many members are sharing copies with physicians and organizations in their communities, helping to spread the word about us.  Several of our new members are patients of Dr. Rich at UIC Medical Center, and I want to thank Lisa Kaufmann, RN for making copies of Pathlight available to those patients.

Would those who have so generously volunteered their time and talents please let me know what skills you can offer?  Soon we will form committees to begin working toward our goals, and we will need leadership and committed individuals to do this.  Please share any ideas that you may have to further our efforts.  We are hoping to incorporate before the end of the year, and our goals are:

...to organize a national patients' association with regional and local support chapters.

...to make Pathlight accessible to those who need it but cannot afford it.

...to help family, friends, and each other understand the pain and fear we experience - coping.

...to educate the public about our disabilities.

...to promote awareness among family physicians who can aid in early detection.

...to encourage research and become informed of research in progress.

...to form a "collective voice" so that our needs may be heard among those who have more well known disorders.

As I was reading this article, the new issue of PHA's medical journal, Advances in Pulmonary Hypertension arrived.  In his editor's memo, Dr. Richard Channick focused on the Scientific Sessions held at PHA's Conference this past June - and the Conference itself - and he writes:

Not surprisingly, the evolution of Conference perfectly mirrors the growth of PHA itself.  The iconic image of 4 people sitting around a kitchen table has morphed into a major organization that provides a dizzying array of services to patients, develops and implements many invaluable educational programs and funds both basic and applied research.  A remarkable evolution!

PHA has evolved but I'm very proud that, despite the changes in scale, we have stayed true to the thoughtful and solid foundation our founders provided.

Thanks to Pathlight's current editor, Megan Mallory, you can now read the first three issues of Pathlight.  When you get to the page, scroll down to Back to the Beginning.

Research...

I talk a lot about PHA's four distinct research programs and the partnerships we have developed.  PHA is proud that in this small disease over a million dollars in research funding is provided through them each year.

What I don't talk a lot about is how much additional PH research funding is generated through our advocacy work.

Dr. Lisa Taylor's work is a great example. 

In 2005,  PHA began to look at the Department of Defense (DOD) medical research program.  Gavin Lindberg, who does a lot of our Capitol Hill work, began to collect letters from PH patients and family members in the military, explaining the importance of PH research to them.  (That's Gavin on the left, receiving an award from PHA's then Board Chair, Carl Hicks, a retired army Special Forces colonel.) In 2006, PH was listed for the first time as a disease eleigible for DOD research funding.

Today, Gavin wrote to let us know about Dr. Lisa Palmer at the University of Virginia who has received a grant for $946,875.00 to study aspects of pulmonary arterial hypertension. Read about her grant.

Advocacy can't do the reasearch.  It can't guarantee the creation of excellent research projects.  However, in a growing field with bright researchers, we can and do open doors and make new opportunities available.

Like our internal reseaearch programs, that's something to be very proud of, too!

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