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.