Tuesday, June 24, 2014

What a Weekend Can Mean

Well over 1,500 lives were touched this weekend in an event that, as far as I know, has no parallel. Certainly in my admittedly biased opinion, the Pulmonary Hypertension Association's International Conference is an event unlike any other.

Our Conference is unique for so many reasons, not the least of which is that it brings together patients, caregivers, industry, and health care professionals under one roof for an event that teaches, tugs at the heart, and (most importantly) inspires. And it all gets pulled off by about 40 incredible staff and one very busy hotel.

Most of the Generation Hope Advisory Board
My own highlights were many. My favorite parts are split equally between spending time with other patients, many with whom I am in frequent contact with on the Internet but rarely see or have never met, and getting a chance to hear from the premier thought leaders in our field and soak up every bit of knowledge I can from them.

Now that I've been involved with PHA for quite a few years, and had a hand in building a few resources that bring patients together, there is
Three Colleens
nothing that makes me quite so happy as to sit back and just watch the joy that comes from the connections that get made. You have to see it to truly feel it, but when you watch people embrace over a shared cause, a shared heartache, a shared sense of inspiration... well, I am rarely at a loss for words, but for that feeling, I am.

Dr. Greg Elliot
And then there are the doctors and nurses. I don't think I'll ever quite get over my awe, and certainly
will never let go of the feeling of thankfulness for what these professionals have accomplished thus far, and work so hard to still achieve. Because of course we've made amazing strides in the PH field these last few decades, but goodness knows there is still far to go.

I made it a point to track down a few of them this time around and pick their brains. The fact that a busy doctor would pause in their day (or late evening!) and spend 20 minutes with me in focused conversation, sharing their thoughts and ideas, their knowledge, and their history, means the world to me.

It inspires me too. I've got a fundraiser in mind for a targeted PH cause that is getting to be pretty important to me... And it is because key players took the time to educate me on why it is so important to them.  When inspiration strikes, it's best to get moving on making something happen.

Actually, my friend Diane Ramirez said it best in her Sunday morning keynote, "You can do something big or you can do something small. But it doesn't matter as long as you reach at least one person."

Well... she is absolutely right. And if you came away from this experience inspired like I did, let's get you moving. Even if you're not quite sure what you want to do, contact PHA (or myself), tell us you want to get more involved, and I promise you we will find you a job.

Right from the beginning of this weekend, I had this deep sense of peace I was having a hard time identifying the source for. Usually there is more of a sense of urgency, or a fair dose of stress around a to-do list, that I have around Conference (this is not necessarily a bad thing). This time, I was just so... zen. I'm still not sure, but I think it has to do with how excited I am about the incredible progress and new initiatives I know PHA is spearheading. I also know in my heart that I am literally doing everything I possibly can to move us towards a cure, and a whole lot of other people are doing that as well. And the results of this collective effort are getting to be pretty staggering. 

In some ways I could go on and on about what Conference means to me.  But I think I'll let other voices tell you instead.

As other patients told me this weekend: To me, Conference is...

"The greatest." (Rick P.)

"A life changing event that allows you to feel connected and alive through interaction with medical professionals and patients." (Michelle F.)

"Awesome-sauce." (Kayla N.)

"An experience above any other..." (Deziree R.)

"Simply amazing!" (Summer G.)

"AMAZING!" (Shelly C.)

"Encouraging" (Barbara C.)

"A lifetime amazing experience to meet new people, reunite with across the world friends, and an opportunity to celebrate that you are alive." (Anaelis P.)

"Busy... interesting... educational meeting lots of people." (Lisa H.)

"PHantastically PHun!" (Susie A.)

"Awesome and very informational" (Karen D-G.)

"Awesome and busy too." (Debra R.)

"An amazing collaboration of PHA staff, Board Members, patients, Medical Professionals, and sponsors that have created a once in a lifetime experience for every attendee." (Tiffany G.)

"A must for every PH patient and caregiver." (Deborah W.)

"Inspiring!" (Caroline R.)

"Encouraging!" (Janet M.)

"Phantastic!" (Pat Z. and Jennifer K.)

"Phabulous!" (Jennifer K.)

"A life changing experience, a moment in time never to repeat itself, a beacon of hope for the Southern most tip of Africa - Creating Awareness of PH in South Africa!!!" (Denneys S.)

"Awesome and amazing!!" (Elaine W.)

"Awesome but too short!" (Ornah L.)

"The most comfortable place in my world." (Jenn L.)

"A way to help others and a way to get a little help for myself." (Debbie C.)

"A must." (Michelle H.)

"Conference is amazingly exciting and totally exhausting but I was like a kid who was scared to nap because I might miss something." (Karen L.)

"Empowering and hope instilling!" (Vikki A.)

"An event that must be experience to be fully understood. There are no adequate words to describe the magic that happens when patients get together to compare notes, learn, and celebrate and support each other." (Mary S.)

"Where everyone understands me totally!! We meet as strangers but know in many ways what the other is feeling." (Grace W.)

"Educational and busy!" (Joellen B.)

"A conference of hope!" (Lindsey B.)


  1. Great job! So glad I got to meet you, Colleen and give you a hug. Thanks for all you do.

  2. Eeeek, I made your blog!!! I feel special!! I'm so glad I could attend again this year, and I certainly will try my best to get to Dallas! I think we'll need a Colleen reunion by then!! Maybe we can try to hunt down that Colleen the 4th??? :)

  3. You ARE special, my dear! :) So glad you could attend as well! And good call on the Colleen Reunion! There's a 4th Colleen too? Oh wow, that will get confusing!

  4. Thanks for the wonderful opportunity to be part of your Blog dear Colleen. Lots of hugs from www.phsa.co.za