The first pediatric PH research fund is opening its doors…

In little more than a decade and a half, we have seen incredible growth in the field of pulmonary hypertension.  We have gone from no treatments to nine, to being a disease of little notice in the medical community to one with great and growing educational structures, from hopelessness to hope.

It is now time to bring that same progress to pediatric PH.  Opening the doors for the RobynBarst Pediatric Research and Mentoring Fund is an early and essential step.

Here is an updated version of the note I sent to PHA’s Board and staff about a week ago …

On Saturday evening September 22 at about 7:00pm Pacific, Carl Hicks announced that the Robyn Barst Pediatric PH Research and Mentoring Fund reached its $1,000,000 stage 1 goal.  The doors for the first ever pediatric research fund for PH are now opened!

While the goal was reached at the at the Thirsting for a Cure event in Oregon, it was the culmination of a two year communitywide effort. We owe a great deal of thanks to a great many people…to the Cardiovascular Medical Research and Education Fund (CMREF) for their leadership grant, to Steve White and his family for their generous pledge to get us on our way, to the Linnens, Srinivasans and MacDonalds for their special generosity, to Actelion and United Therapeutics for their high-level sponsiorships for Thirsting for a Cure, to many other donors, to Carl Hicks whose impatience to get us to our goal led to the event that brought us over the top and to Actelion CEO, Shal Jacobovitz who called Carl just before the event and committed to fill any gap to get us to the $1,000,000 target for activation of the Fund.

Most of all, we owe Dr. Robyn Barst for her work in pulmonary hypertension as a clinician, a researcher and builder of the field, especially in the once lonely area of pediatric PH.  Robyn’s generous lead gifts allowed us to establish the Fund and move it from dream to reality in little more than two years.  Her vision in including a mentoring element will help ensure the development of future pediatric PH experts.  Robyn, we are grateful.

Dr. Serpil Erzurum, chair of PHA’s Research Committee recently led a meeting to plan for anticipated implementation of Barst Fund activities.  Based on that meeting, we contacted and rapidly reached agreement with the American Thoracic Society for grant management services. We will now begin to work with them to establish program guidelines based on our existing proposal, set application and review deadlines and make our first grants.

In closing, Saturday’s event was a lot of fun with a lot of wine at the Alexana Winery in Newberg, Oregon.  Mike and Bonnie McGoon, John Hess, Betty Lou Wojciechowski (and family), Mary Jan Hicks, Bruce and  Rita Brundage, Gail and Denis Hayes, Gareth Gwyn and many others joined us, including Charity Sunshine who sang for the gathering.  The Portland Metro Support Group did great work at the registration table and beyond to make the event the success that it was.  Carl got a lot of people driving happily down a long gravel road to get to this event…and more happily back.  Well done. 

The Robyn Barst Pediatric PH Research and Mentoring Fund has gone from dream to reality.  Now it’s time to leverage that reality to growth of the pediatric PH field – for the good of the kids and their families living with this disease…today and tomorrow.

The meaning of events - part 2

On June 30 I published a blog titled, The meaning of events. 

It included a video filmed at the Power for PH PHun Walk for a Cure in Edison, NJ.

Today, I received a comment on that blog asking for information about the Country Happenings PHun Walk that took place around the same time I wwas writing that blog.

Here's the story as I heard it from PHA's Jess McKearin...

On July 28, PH patient Vicky Turner hosted the Inaugural Country Happenings PHun Walk in her rural town of Brant, Michigan. Vicky first approached her community with her idea in December of 2011 – she saw an opportunity to organize a PHA special event in conjunction with a popular annual event her town organizes - the “Country Happenings Festival.” Out of this concept grew a July 2012 PHA fun walk which helped educate Vicky’s town about the signs and symptoms of PH. The Country Happenings PHun Walk drew nearly 70 participants and raised over $2,000 for research and services through registrations, donations, and a popular raffle. Walkers began their trek at the Marion Springs Firehouse at the center of town, and ended their awareness-raising walk at a local church, where they enjoyed a luncheon and refreshments. The walk was considered so successful on a local level that the Country Happenings Festival committee has invited Vicky to host the walk in conjunction with the festival each year moving forward.

Here's the extraordinary part.  Vicky had no access to internet, could only fax information by driving to her town’s general store, and overcame a number of personal health and community obstacles to make this walk happen. It was quite remarkable to witness!

Vicky Turner is another person in our community who has shown us the meaning of events and the so many ways that people fight back against pulmonary hypertension.

Congratulations and thanks to Vicky and all who make this and so much possible...including the folks who organized another great event, the Ist Annual Central Florida Phun Walk which took place over the Labor Day weekend.  Here's some info from PHA's Leslie Mahaney on that event...

This inaugural event was hosted by PH patient, Joy Morgan, who is the leader of the Central Florida PH Support Group and her niece, Danica Sun, who interned with PHA's Volunteer Services this past spring. Joy did an incredible job with fundraising and marketing – she had coverage in her local newspaper and had a live broadcast at her event by WSIR radio. We have not figured out final numbers since the event was this past weekend and she collected a lot of money on race day. The group was raising money for research and patient and family serving programs.

The photographer who compiled this video is Dr. Ernesto Uy, Joy's physician. 

1st Annual Central Florida PHun WALK & 5 K from Ernesto Uy on Vimeo.

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.