Godspeed...

Now it begins...

Dr. Bob Frantz of the Mayo Clinic and Dr. Ray Benza and Physicians Assistant Jessica Lazar both from  Allegheny Medical Center in Pittsburgh are packing up and getting ready for their flight to Tanzania.

Once there, they will prepare to summit the 19,330 ft. Mt. Kilimanjaro, the highest mountain in Africa nad the tallest freestanding mountain in the world. Their adventure will begin on February 19 and go through Feb. 27.

During the past two months, it's been my privilege to be part of a team that has met weekly by phone to help turn their climb into an opportunity to increase awareness of PH in the U.S. and globally and to raise a minimum of $100,000 for PHA's research and patient-serving programs.

We have heard about the medical professionals' rigorous training for this climb.  We have learned about their understanding - and intention - that, at the heights of Kilimanjaro, they will experience the symptoms of pulmonary hypertension their patients live with every day...the better to offer informed and empathetic treatment. We have been inspired by their blogs.

Their itinerary, as produced by their guides and sent by Jessica Lazar, is below but their climb is already a success...

Tremendous awareness is already buiding.  You can find links to some of the press on PHA's Climb pages

They are also very close to their fundraising goal...within $7,000 as I write this. You can help get them over the top by visiting their Donation page or attending one of the Unity Walks being held to support the Climb.

The Climbers will be electronically equipped and will be doing interviews (I'll be doing one of those interviews on Feb. 23) and posting updates daily from the mountain.  Check their blog and the PHA website to follow their progress,

Here's their itinerary...

DAY 1 (Feb 19)

Arrive anytime at Ilboru Safari Lodge in Arusha, Tanzania. With prior arrangement, airport pick up and private transfers to the hotel are available from Kilimanjaro International Airport (JRO), or simply make your own way by taxi. We will gather in the evening for a pre-climb briefing and an equipment check. We will also confirm you have the appropriate mandatory medical coverage and travel insurance.

DAY 2 (Feb 20)

We take a ride to Londorossi National Park gate to complete the necessary registration formalities, before driving a short distance on a steep track through farmland and plantations (9,200 ft). We continue climbing steadily on foot through shrub forests and stands of giant heather to reach the rim of Shira Plateau (11,000 ft). The views across the surrounding plains open up as we approach our first camp, Simba Camp (11,600 ft).

[4-5 hours walking]

DAY 3 (Feb 21)

Today is an easy day to help acclimatisation and to explore the grassy moorland and volcanic rock formations of the plateau. We walk to the summit of Shira Cathedral (12,300 ft), a huge buttress of rock surrounded by steep spires and pinnacles. There is a tangible sense of wilderness here, especially when the afternoon mists roll in. From our camp near Shira Hut (12,600 ft), we take in the unforgettable views of Mt. Meru as she floats among the clouds.

[4-5 hours walking]

DAY 4 (Feb 22)

The morning walk is a steady climb away from the moorland of Shira Plateau to reach the broad upland desert beneath the Lent Hills, with expansive views in all directions. After lunch in our camp close to Moir Hut (13,800 ft), there is the option of a more strenuous afternoon walk to reach the summit of the Lent Hills (15,400 ft). We can explore the area beneath the Northern Icefields, a remote place rarely visited by tourists, with unusual views of Kibo. Few visitors get to this remote corner of Kilimanjaro.

[3-6 hours walking]

DAY 5 (Feb 23)

We enjoy a morning of gentle ascent and panoramic views, walking on lava ridges beneath the glaciers of the Western Breach. After lunch at our Lava Tower (14,900 ft), there is a steep but spectacular afternoon walk on the rocky lower slopes of the Western Breach. This afternoon excursion is highly recommended for acclimatisation purposes and for the superb views of hanging glaciers on both sides of the Breach.

[4-6 hours walking]

DAY 6 (Feb 24)

A steep descent into the bottom of Barranco Valley (12,800 ft) leads us to the famed Barranco Wall and its steep climb. At the top the undulating trail crosses the flanks of Kibo with superb vistas of the Southern Icefields. The terrain is volcanic scree, with pockets of vegetation in sheltered hollows, and a powerful sense of mountain wilderness. Our next camp is at Karanga Camp (13,100 ft), the last water point on the approach to the summit.

[5-7 hours walking]

DAY 7 (Feb 25)

We follow an easy path on compacted scree with wide views that gains altitude unrelentingly to reach Barafu Hut (14,800 ft) for lunch.

There is a short acclimatisation hike to the plateau at the bottom of the southeast valley (15,700 ft). The remainder of the day is spent resting in preparation for the early morning final ascent.

[3-5 hours walking]

DAY 8 (Feb 26)

We start our ascent by torchlight about 1 a.m. so that we can be up on the crater rim by sunrise. The steep climb over loose volcanic scree has some well-graded zig-zags and a slow but steady pace will take us to Stella Point (18,800 ft), in about five or six hours. We will rest there for a short time to enjoy the sunrise over Mawenzi. Those who are still feeling strong can make the two-hour round trip from here along the crater rim to Uhuru Peak (19,345 ft), passing close to the spectacular glaciers and ice cliffs that still occupy most of the summit area. The descent to Barafu is surprisingly fast, and after some refreshments, we continue to descend to reach our final campsite, Millenium Camp (12,500 ft).

[11-15 hours walking]

DAY 9 (Feb 27)

A sustained descent on a well constructed path takes us through a lovely tropical forest alive with birdsong and boasting lush undergrowth with considerable botanical interest. Our route winds down to the Kilimanjaro National Park gate at Mweka (5,400 ft); and on through coffee and banana farms to Mweka village, where we are transferred to Ilboru Safari Lodge in Arusha.

[4-6 hours walking]

DAY 10 (Feb 28)

After breakfast, we can arrange for a private transfer or taxi to Kilimanjaro International Airport (JRO)

...and then there's staying at home

My last blog was about  the complications of travel.

Staying at home may not be much better.

I live in Takoma Park, Maryland which is 10 minutes from PHA's Silver Spring office and right next to Washington, DC.

Coming from NYC many years ago, I've always appreciated the "more reasonable' snows we have in this area.  Enough for some occasional white...not so much that shoveling becomes a major part of life.

At least, that's the way it was until this year.  We just had our second major snowstorm in six weeks.  And, this one was a doozie!   Starting Friday evening and going through late Saturday, we got about 30 inches - the largest drop in my 35 or so years in the area.

Well, shoveling has become a major part of my (and everyone else in the area's) life...at least this weekend.

At any rate, I'm all dug out and was able to slide my way to work today.  Next snowstorm is scheduled for tomorrow night.

Traveling too much...

So, here's a story about nothing much except maybe how frazzled my travel is becoming.

In the last week of January, I made a short trip to San Francisco.  I had a couple of meetings, followed by a talk at a conference.  The schedule went long and my presentation was delayed by about an hour.  When I finished, time for my return flight was tight and I raced back to the airport.

Once at SFO, the airport security line wasn't too bad and I got through in 15 minutes, leaving me 15 minutes before boarding.  As soon as I reassembled myself, I started making calls and looked for gate 85.  Overhead was a sign for gates 75-90 and in front of me was a wall.  Focused on my call, I saw an escalator to my right.  I got on and - halfway down - turned around and saw the wall had opened up just past the escalator.

I turned back and looked down...and saw the security desk.  When I got to the bottom, I saw said to the TSA officer.  "I took the escalator down by mistake.  I was the only one on it and you were watching me.  I didn't pass you.  Can I turn to the right in front of you and go up the stairs?"

"No.  Once you're on the escalator you're out and have to go back through security."

Oh well, I did my double security and made it to the gate in time to be the last person on before they closed the doors.

Introducing Generation Hope: Colleen's guest blog

There's a new group in PHA...and we're delighted as they begin to make their voice heard.  Generation Hope has been forming in recent months as a group that...  Wait, why should I tell you when one of their leaders, Colleeen Brunetti has sent a guest blog.  That's Colleen in the picture with her son Aidan.

So how exactly does one start an introduction to a guest blog spot? Name? Colleen. Why I’m here? I am 30 years old, a mother of one, a teaching professional, and I was diagnosed two years ago with Pulmonary Hypertension. I have a lot to say on the subject! In fact, I’m pretty hard to keep quiet. But as to why I’m really here… well, Rino was kind enough to lend out his blog to a group that I am really excited to be a part of. And it is my privilege, on behalf of the group, to tell you all about us here.


Introducing Generation Hope! We are a group of PH patients in our 20s and 30s. Our road on the PH Journey has been varied – from diagnosis to treatments. Collectively, we’ve probably seen just about all of it. We come together with a distinct purpose in mind. From PHA’s (snazzy new) website, “Generation Hope is an email group for college students, young professionals and other 20- and 30-somethings living with pulmonary hypertension. The group is a safe space to vent, socialize and chat about everything from relationships to exercise to conquering all of life’s adventures with PH.”  Take a look

Personally, Generation Hope has helped me form a new life motto… the goal for me is to be “Thriving, not just surviving, with Pulmonary Hypertension”. The disease turns your world upside down. It rattles you to your core. It replaces hopes and dreams and life plans with uncertainty and fear… and while those feelings may always be there, rearing their ugly little heads on the dark days, it doesn’t have to stay that way all the time. We can take what life has hurled at us and hurl it right back with a positive spin. We can have hope. Most of all, that hope is in a cure yet to come.

There is a saying that gets bounced around the PH Community, “Hope is a verb”. Reach way back, if you will, to 7th grade English class… a verb, by definition, is an “action word”. It shows action. Now if your memory is REALLY good, you might be thinking, “Wait, so that makes hope a noun. It is an idea, not an action”. Sorry, wrong! Without action there is no hope – and hope must be put into action. So, we take a little license with the English language (apologies to Webster and friends) and state, unequivocally, that “HOPE IS A VERB”.

So, what does that action look like? Well, for me and my three co-leaders of Generation Hope it means stepping forward and spearheading the e-mail group and Generation Hope’s future direction. Those three other leaders – Brittany, Lindsay, and Sean – are also pursuing pretty amazing PH advocacy projects of their own.

For Generation Hope itself, it means we are taking our first baby steps as a group and joining in on the “Path to a Cure”: This February 19 - 26, two PH specialists and Pulmonary Hypertension Association (PHA) Scientific Leadership Council members, Dr. Ray Benza (Allegheny General Hospital) and Dr. Robert Frantz (Mayo Clinic), along with Jessica Lazar, PA (Allegheny General Hospital), are tackling the ultimate challenge together - climbing Mount Kilimanjaro, Africa's highest mountain, reaching its summit on February 26, 2010! Their goal? To find a path to a cure by raising $100,000 to support PHA's research program and patient- and family-serving programs.

We are challenging our Generation Hope members to create giving pages of their own to raise money in support of this amazing cause. Wish us luck. Please support us in donations, positive thoughts, vibes, and prayers. Tell your friends – tell them about us, tell them about PH. Keep the hope alive and in action.

Thank you.

Colleen and the Generation Hope Leadership Team

It begins...

Conference is coming...

Every two years, PHA organizes what has become the largest PH meeting in the world.

While the work begins shortly after the previous meeting ends, the day that Conference registration opens is our official kickoff.

And that kickoff is today!

There's something extra special about this year's kickoff.  It's timed two days after the launch of our totally redesigned and muchly rewritten website.

There's always been a lot to find on the 10,000+ pages of PHA's website.  Now, that sea of information is easier to navigate and, if you use the new registration/logon option, a much more personally tailored experience.

As the first day of registration closes, our first 15 guests have already signed up!  Not a bad start as we move towards our goal of 1,300. Learn more about Conference. Whether you're a patient, caregiver or medical professional, t's a meeting you won't want to miss.

A discovered birthday...

Today, January 12, 2010, was a marker...

Every year, I do an online presentation on the State of PHA.  It's a combination of slides and voice via conference call.  A few weeks before I deliver it to our general membership, I do a preview for our support group leaders.  Today was that preview. 

It's always a lot of fun.  Debbie Castro is an energetic emcee and there are good questions questions from many of our most active leaders. During the call, I mentioned the spirit of our founders and quoted one of them, Dorothy Olson, from the first PHA board meeting I attended in January1999.

That got me thinking about the first PHA meeting around the now-famous kitchen table in Florida (still in Pat & Jerry Paton's home).  I called the Patons to try to hunt down the date of that meeting.  After a bit of hunting, they found it in a story in Pathlight...January 12, 1991.

So PHA is 19 today.  We're coming to the end of our teens and I'd say maturing well in the impact we're having. Happy birthday PHA and may our wishes for better treatments and a cure come true very soon!

By the way, feel free to take a look at our e-learning event schedule.  You'l find recorded archives of paste events there, too.

New Year, Renewed Commitment...

I learned a reall lesson about blogging over the past couple of months.

As we approached Awareness Month, this past November, I was thrilled.  I knew I'd have a lot to blog about.  After all, I was starting the month at the American College of Chest Physicians Conference in San Diego.  After that, I was headed to the First Annual Research Triangle PAH Symposium co-sponsored by Duke and the University of North Carolina, the Baltimore FunWalk, presentations of our Med Ed Fund to Gilead and Actelion in South San Francisco and Foster City California, back to Washington, DC for our Fifth Annual Congressional Luncheon and back out to the Cleveland Clinic's Sixth Annual PAH Symposium and starting out December with a trip to Boston for the Tufts Seventh Annual Update in PH.

So I was right, there was a lot to blog about...but then came the lesson like a sledgehammer.  Here it is: day and night meetings limit time to write.

I thought I'd find more time in December but that didn't happen with end of year fundraising and 2010 program planning.

So to all those whose great stories I didn't get a chance to write about, my apologies. While I'm not big on New Year's resolutions, it surely is my intent to get back in the swing with at least two blogs a week.

There, I've put it in pixels.  Now let's see.if I can make it stick!