Thursday, January 14, 2010

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

Wednesday, January 13, 2010

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.

Tuesday, January 12, 2010

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.

Monday, January 11, 2010

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!