Living life: Savanha, Katie Grace and Kathy...

This blog is a little late coming but it's a story worth telling...

For her 14^th birthday party earlier this year (and the previous 2) Savanha Groebner asked friends and family members to make donations to PHA instead of giving her gifts. Savanha’s little sister, Katie Grace, has PH.
 

This year, Savanha and her friends went around their town on a scavenger hunt.  This is what it said on the cards she handed out:

“At 9 years old I found out my baby sister, Katie Grace, had pulmonary hypertension. We were told she had 1 year to live. I met other families facing the same challenges. I now stand with them in HOPE for a CURE. My goal is to be a cardiologist and a PH specialist. I do all I can to help. This is my 3rd birthday I have asked my family and friends to donate to PHA in lieu of a gift.”

Yes, Savanha and Katie Grace are an special - and so is their mom. A friend sent me Kathy Groebner's video, titled What About Me? today and that's what got me thinking about this inspiring family.

With all the things our community goes through, people keep creating and building.  If that's not life, I don't know what is.

Expressing yourself is the pathway to healing...

Expressing yourself is the pathway to healing.

Those were the words of Lester Friedman, PhD, a humanities professor whose career has been at  schools of medicine.

Yesterday I posted a blog titled, Surfing the Blogs. It was about people in our community who write and the benefits they get and give.  That blog reminded me of an amazing keynote presentation by Dr. Friedman at our 2004 Conference in Minneapolis.

It was one of the first that we filmed and today I asked our staff to put it up on YouTube.  Writing for Your Health speaks of stories as medicine, offering wisdom and statistics you do not want to miss...

Surfing the blogs...

Blog information seems to flow like the waters. This afternoon, PHA's VP for Community Engagement, Mollie Katz, sent a note about a blog that focused on PHA's Research Room at Conference.

Med School Watercooler is a blog from the University of South Alabama's Medical School. Pulmonary Researchers Participate in Pulmonary Hypertension Association's International Conference is a well-told story of how one medical team participated in the Research Room at PHA's International Conference in June and the important work they did.

Reading that first blog got me to exploring...

Next, I found Team Phenomenal Hope's site and their blog about their Conference experience.  These are the great folks from the University of Pittsburgh who unveiled their plans to bike awareness of PH across America in 2014.  Besides their Conference story, Team PHenomenal Hope energized by PHA Conference offers a lot of great pictures.  By the way, I love the theme of their website, Team Phenomenal Hope...It's not just about the bike. It's not even about the race. It's bigger than that...

We look forward to working with Team Phenomenal Hope to make this a national PH awareness event when they Race Across America in two years.

A little bit of searching brought out a lot more discovery.

Sometimes, in our community, blog information flows from the sharing of life experiences.  That can happen with groups like Generation Hope and their blog for young adults living with PH.

It can also happen with individuals, as I found with blogs from Colleen S. and Colleen B.

Colleen S. lays her goal out in the subhead to her Daily Ponderings...the ramblings of a girl with Pulmonary Hypertension...sharing the ups and downs of this disease and anything else I want to share!

So does Colleen B. in her PH and "The New Normal"...finding a path with Pulmonary Hypertension.  Her profile explains why Colleen B. writes:

I am a mom in my early 30s. I was diagnosed with Pulmonary Arterial Hypertension in January of 2008. This life changing disease has forced me to find a new perspective on things, to find a "new normal," and ultimately to decide what that new normal would look like. I don't believe in letting the disease define that for me. Chronicled here is the story of that still on-going journey.
 

Becca A. tells her story through My Life as a Chronically Ill Teen, defining her purpose clearly and powerfully...

This blog is about hope, love, acceptance, and life's ups and downs. Living with a chronic illness isn't easy, but with the written word, maybe we can bring some hope and kindness back into the world.

Sean Wyman's Blog, Sean Wyman--Future D.O...the thoughts and reflections of a graduate student chasing the dream of being a healer shares insights from his experiences, observations and, yes, trials. 

Kim's blog - The Life and Lungs of Kim is self-described as "the chronicle of a woman who was diagnosed 6 years ago with Pulmonary Hypertension..."

And then there's Pam G.'s Blog, Multi-tasking Wife's Life, in which a caregiver celebrates the joy of self-publishing in the blog world.


Blogs are a great way to talk about what you think is important (or just spin the day's events) in a way that you feel comfortable. They are easy to set up, too.  And, help is everywhere.  All you have to do is Google, how to blog.

To learn more about the value of blogging...or diary-keeping...or any other form of self-expression, you may want to watch an interactive workshop in PHA Classroom. Words for Wellbeing. 

It's based on the fact that medical research actually links creative endeavors, such as expressive writing, to reduced symptoms and improved health. You may want to invest 45 minutes to get ideas, prompts and tips regarding writing for your own health, as well as guidelines and considerations when writing for publications like Pathlight.

The session was presented by Sylvia Earley, volunteer copy editor for Pathlight, Megan Mallory, PHA's Publications Director and Jeannette Morrill, author of “Living with Pulmonary Hypertension: 34 Years and Counting…Healing the Mind and Body Through Faith.”

Also very much on target is a PHA webinar, Creativity and Healing through Blogging, featuring Leigh McGowan and Colleen Schnell and hosted by Megan Mallory.
My goal for this blog was to spotlight the fact that many in our community are finding satisfaction and personal value through writing.  It may be something you want to consider.

Expressing yourself can be the pathway to healing.

Oh...and if you know of any other blogs from the PH community, please feel free to post a note and let me know.  Thanks!

From a kitchen table to around the world...

Last year, Mike McGoon, our former board and Scientific Leadership Council chair and a cardiologist specializing in PH at the Mayo Clinic made a good point.

"PHA has so many good videos but none of them tell our story.  Wouldn't that be valuable?"

There was no question he was right.  The only question was when to do it.

That answer took less than two minutes.  Our Tenth International PH Conference was coming up the following June and that was our clear target.

We gave our friends at Glenn and Glenn our goals and they completed the project in time for the opening of Conferernce 2012.

At 1:00pm on Friday June 22nd in the Renaissance Hotel in Orlando, the ballroom filled with over 1,500 PH patients, caregivers, medical professionals and friends from 27 nations, the lights came down and we premiered our new history video: From a kitchen table to around the world.  As it ended, the spotlight came down to our three surviving founders (Dorothy Olson, Pat Paton and Judy Simpson, with an empty seat for Teresa Knazik), seated at the same kitchen table around which they founded PHA on January 12, 1991.  The video of Judy Simpson's speech will be posted in the next couple of months... along with much of the other content from Conference 2012 on PHA Classroom (for patients & caregivers) and PHA Online University (for medical professionals).

For now, though, I hope you enjoy From a kitchen table to around the world...



There's lot's more PHA history available for you, including Gail Boyer Hayes' outstanding 116 page early history.

The special in PHA events...

Each year there are about 60 events held throughout the U.S. to benefit PHA research and patient serving programs.

We call these special events but it's really the people who are special.

As I write this, I am halfway home - sitting in Dallas-Fort Worth Airport - from a golf tournament in Aliso Viejo, California.

Golf is golf (I can say that as a non-golfer) but this tournament was an act of love.  The Wojciechowski family writes on the tournament website...

It is with extreme pleasure that we invite you to participate in the 5th annual Swing 4 the Cure - Wojo PH Golf Classic on MONDAY – July 9th, 2012.

This charity tournament is held in memory of Jerry Wojciechowski, my wonderful husband and friend and in memory of our two sons Michael and Matthew. All three lost their battle with Pulmonary Arterial Hypertension too soon and will never be forgotten.

We are pleased to announce that we will be holding our tournament at the exquisite Aliso Viejo Country Club Aliso Viejo, CA We anticipate that this event will be a great success and will be fun and memorable for all who participate. Since 2008, this event has raised over $160,000 in research funds!

Betty Lou Wojciechowski (Wojo) has led her family (especially her adult daughter and event partner, Michelle) and friends to organize these events for the love of her husband and two children who she has lost to this terrible disease but also for the love of those still living with PH.  During the past decade or more I have seen her organize and lead support groups, turn her family's story to one of inspiration and hope for so many in our community, draw others into action to create a better today and tomorrow and, as her website says, raise over $160,000 for PH research.

Betty Lou is a living example of "the power of one" to make a difference.

But she wasn't alone in the post tournament dinner of 200 or so. Mixed in with golfers, relatives and friends were many other amazing people.

There was Jack Nino. Jack lost his fiancé to PH a decade ago.  Ever since, Jack has come to PHA's International Conference and volunteers to work the whole time in our store. He also organizes a very successful golf tournament in Las Vegas.

...And Darren Bell who, after the loss of his sons went on to lead and help shape our partner and friend, PHA Canada as its founding board president and board chair.

...And Shari Caffrey, whose fulfillment of Taylor's Wish has grown in three short years from a 5K walk/race to a community celebration of the possible.

...And Steve Van Wormer whose talents and instinct have brought  our community the ability to deliver new levels of PH awareness to our fellow citizens.

...And, Shannon Munson and her husband, Rob, who together moved the audience with their PH journey fromn her diagnosis to despair to hope

I could go on for a long, long time but I think I've made the point...it's the people who make the choice to give of themselves, to fight back who are - or maybe I should say, become - special.

Conference 2012!

The first PHA Conference I attended was PHA's Fourth in June 2000 in Chicago.

It was amazing in its connections of patients, families and medical professionals. I'll never forget how large the crowd looked...it was 800, up from 500 in 1998.  In the back of the ballroom 4 or 5 exhibitors had 8’x10’ tables and were able to answer questions for patients - that, too, was a first.  When Conference was over, we invited 10 or 12 people from the 7 nations attending outside the U.S. to meet with PHA's board.  At the time, there were the U.S., French and German PH associations.  Shortly after that meeting, associations launched in the UK, Israel and Japan.

Now, I've returned from the 2012 International PH Conference, PHA's Tenth.  My amazement continues... at the connections, the commitment, the exchange of knowledge and mostly, the spirit of hope.  As I sort out all that I saw and continue to hear from others, here are a few brief thoughts to get started...

·       This Orlando Conference we completed last Sunday had 1,511 registrants from 27 nations.  There were more patients, there were more caregivers, there were more doctors, there were  more nurses and there were more from industry than we ever hosted before.

·       The Scientific Sessions we added to Conference in 2004 have continued to grow in attendance and quality.  When I walked in the room on Thursday, I saw more medical professionals than the entire Conference a decade ago.  The comments from physicians and researchers convinced me that Dr. Bull and his committee brought science on their chosen topic – The Genetics of Pulmonary Hypertension – at the highest level.

·       This was a more complex and layered Conference then we ever organized before.  One of my traditions at Conference has been to walk the floor - to use my time to be available, to listen and to get to know our members.  At this Conference, there were so many essential side meetings, to my regret, I found that possible to a much lesser degree.

                    

·       We pre-opened on Thursday with PHA's Board meeting and our Second International Leaders' Symposium. About 40 PH association leaders from 20 nations had the chance to offer each other training, share experiences and develop ongoing connections.  Canadians and Latin Americans also had their own planning meetings during Conference.

·       Over the years, we have increasingly used video to tell our story.  It was wonderful to see people’s reactions to our Conference opening on Friday where we showed our new History of PHA video… and when it was over, brought the spotlight down to the surviving founders (Pat Paton, Judy Simpson and Dorothy Olson) seated around the actual kitchen table where they met with Teresa Knazik in June 1991 to found what would become PHA.  That film will now be available for PHA events and activities.

·       At Friday’s dinner Dr. Greg Elliott told the medical history of pulmonary hypertension and how its evolving solutions came to be intertwined with PHA’s own history… a theme of interconnectedness that many spoke to throughout Conference.

·       When people registered, they were given buttons with zebra stripes and began to see elements of Conference that reflected the theme.  Dr. Lynn Brown explained what these meant on Friday when she described PHA’s new Early Diagnosis Campaign.

·       It was wonderful to see so many of the children I met at the early Conferences now as young adults and many of the adults continuing to move forward with their lives.  One of the striking sights for me was poking my head into the kids room and seeing more than 50 young children – patients, children of patients and children of medical professionals – working together on projects and creating their own friendships and communities.

·       On Sunday, I was interviewed for a Pulmonary Vascular Research Institute (PVRI) publication by three doctors from Nepal, one from Greece and one from the U.K. and one from the U.S.  Our conversations expanded to how we can better work together… a continuing value of Conference.

·       Facebook postings about Conference seem to be everywhere from PHA's Facebook page to SouthAfrica to Latin America.  The movement continues to expand.

·       It’s good to know that PHA will continue to fulfill its value that meetings should have continuing value through this Conference. Virtually all of the content will begin appearing in PHA Classroom (content for patients and caregivers) and PHA Online University (content for medical professionals).

·       In the end, Conference has always been about the people.  This time was no different.  Highlights for me included Colleen Brunetti in simple eloquence sharing the story of her journey with PH… 13-year-old Matt Moniz telling of climbing the nation’s and the world’s highest mountains to raise awareness and to honor his young friend, PH patient Ian Hess… Dr. Ray Benza relating his work and service to his family’s immigrant roots… and, of course, the conversations in the halls and exhibit areas with so many heroes. All made our theme, the power of one, very real for me.

There’s so much more to tell but it’s time for me to get back to work. I always talk about Conference as our slingshot, the coming together that propels us forward in expected and unexpected ways. It’s time again to pull the band and fulfill Conference’s promise.

I do have one (ok, maybe, three) important question though.  What did you see?  What moved you?  What changed you?

Carl Hicks, an advocacy hero

On Wednesday, June 6 Carl Hicks sat at a long table in front of the Senate Defense Appropriations Subcommittee and told his story and made his request.

A former Army Ranger, Lt. Col. Hicks (Ret.) spoke about his daughter, Meaghan, and her battle with PH.   He has done this many times before, several years ago visiting the offices of over 100 Members of Congress in a two day advocacy marathon.

This time, he was asking the Chair, Senator Inouye and Vice-chair Cochran and the Subcommittee members to once again add PH to the list of diseases impacting military families.  Such a listing will make PH researchers eligible for grant funding from the Department of Defense research fund.  Carl made his request as the Senators looked at him and pictures of his beloved Meaghan.

You can watch Carl’s testimony on the Senate Appropriations Subcommittee website  Drag the time bar beneath the video to just past 33:00 to see Carl

We thank Carl and all our advocacy heroes who are getting to know their own Members of Congress and educating them about PH.  One Member at a time, we can and are making a difference.