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!

Some days are a joy...some are not

We celebrate so many advances in the treatment of PH that sometimes we forget the other side of the coin.

Yesterday was a sad day.  Within a two hour span we learned of the passing of two good people, two good friends, Phil LeGrande and Wendy Bockhorst.

May they rest in peace.

Debbie Castro wrote to fellow staff about Phil...

Dear Staff,

For four years, Phil donated hundreds of hours, lots of energy (of what he DID have), tons of inappropriate jokes, and even $125 to PHA during an urgent matching funds competition on Facebook. He was a support group leader, an advocate on the Hill, and one of our most steadfast and reliable daytime office volunteers.

He usually came into the office with a great attitude, in spite of always having to take breaks to rest. Of course, he came in feisty some times, but he always wanted to make a difference in the community and to help others. He came in with body aches and pains and never complained about it. He complained about everything else, but never about his pain. I loved him for his ability to LIVE life and to expect great things out of himself and others around him.

About a year ago, he stopped responding to our emails, calls, and even letters. It turns out that he was just too sick battling his PH and perhaps residual symptoms of lung cancer.

I posted a message about Phil LeGrande passing away on FaceBook and heard back immediately from at least 4 of our old volunteers. Everyone is saddened to hear this news.


Debbie

Jess McKearin wrote to us about Wendy...

Dear all,

I’m very sad to report news that Wendy Bockhorst passed away earlier today. Her husband Bill called to let us know. Wendy was a PH patient, Support Group Leader in Phoenix, Ariz., advocate, special events organizer and an all-around wonderful woman.


Wendy definitely was an example of hope to other patients. Bill said that Wendy always made a point to tell others that she lived with this disease and wanted to make the most of that opportunity to impact others’ lives. They were also recently remembering the 2008 Conference together and Wendy was talking about how excited she was to attend next year’s. She was already planning for her 2010 Cure PH Casino Night – her 6th special event overall.

She spoke of why she loved planning events: “One main reason that I get involved through special events is because my PH is genetic…if I can continue working to raise funds for and awareness of this disease, then maybe the next generation won’t have to suffer as much. So much has been done in recent years, and PH treatment options now are just unbelievable... By continuing to stay involved, one day we can find the cure.”


Please don’t hesitate to offer other thoughts or memories of Wendy if you’re willing to share. I’ll create a condolence card for us to sign tomorrow.

Thanks,
Jess

The fight goes on.

Kahina's story...

Thanks to  Christine Dickler, PHA's Associate Director of International Services, for this guest blog...

During the holiday season, it’s more apparent than ever how lucky we are to have so many friends and partners in this vibrant community. With hundreds of support groups, dozens of online community groups, and local events to draw us together, we can take stock of the incredible people we meet thanks to this otherwise difficult disease. And new connections are being made every day, in places much further than we might ever have imagined…


PHA’s International Services department is an active hub for patients, doctors, and associations outside the US. The connections PHA makes with the global PH community enhance and inspire our work every day. This fall, we were contacted by a young woman in Algeria who was in search of medication for her mother. Kahina explained that though the drug was approved in her country, her mother frequently did not receive the deliveries in time – an obstacle that left her without treatment for days, weeks, even three months, while the life-saving drug was locked up in customs. Every few months for more than two years, Kahina travelled to the capital to demand that the government approve funding to pay for the next supply, that the hospital place the order well before it was needed, and that customs release the treatment promptly.

As we learned more about her mother’s immediate needs – medicine that would dramatically improve her pressures and keep her well – Kahina’s story revealed a much greater need: advocacy for every patient in Algeria and medical education to ensure adequate treatment. From what Kahina knows, there are only three or four PH patients identified in all of Algeria, and these patients, too, must endure periods without proper therapy.

In the story of Kahina’s mother, there are many heroes. There is the doctor in France who finally recognized her symptoms, allowing her to begin returning to her life as an active painter. This doctor continues to advise her local physician, who must perform tests she doesn’t fully understand in facilities that aren’t fully equipped for the task. There are the government officials who, not understanding the severity of PH or the importance of the expensive drugs, approve an order that costs 20 times more per month than the average monthly income. There are the pharmaceutical representatives who ensured that an ally was placed in the central pharmacy so that medicine would be ordered correctly, and in advance.

And of course, there is the story of a daughter who made friends across the globe in order to keep her mother safe – even if it means taking on new battles! With one of her mother’s ten drugs made more accessible, Kahina says that she’s start fighting to get another approved for reimbursement, saying “…another issue to be solved , I’ll try to do my best again!”

A Thanksgiving message...

On Thanksgiving day, I checked e-mail not expecting to find much.

How wrong I was.

It was a pleasure meeting you last week at the Pulmonary Hypertension Summit at the Cleveland Clinic. I was there a few years ago when you spoke at that summit, but did not get to meet you then. I want to thank you again for all the work that you do. It means so much to me and to other patients with this terrible disease. On this Thanksgiving day, I am very thankful for all the things in my life that I am blessed with. I am also thankful for people like you and the PHA and for the amazing work that you do. I thank you from the bottom of my heart (and lungs!). May you have much more continued success with the PHA. I have attached a picture of you and I from the event and also a picture of myself with Merle and my doctor, Dr. Minai. Happy Holidays!

Sincerely,

Maria Martuccio



The thanks is all mine Maria.  You motivate me. You motivate our staff who I shared this with. You and people like you are the drivers of our ever-accelerating vehicle.  Thank you.