Special Events Stories & Photos

April 25, 2008
Cure PH Bug Boil

Texas Twofer Raises the Bar —With Bugs!
By Deirdre Farrell — Former PHA Special Events Coordinator

Tenth Annual Cure PH Golf Tournament and First Bug Boil Keep Houston PHers Fighting for a Cure

Bug Boil participantsThe good folks in Houston, Texas, sure know how to keep the fun going with two back-to-back events — a unique twist on a legendary event! The weekend of April 25, 2008, began with the Tenth Annual (and Final!) Cure PH Golf Tournament and the fun didn’t stop until guests of the First Cure PH Bug Boil gobbled the last crawfish the next day.

On Friday, Congressman and PH research advocate Kevin Brady spoke to hundreds of golfers before they zoomed away on their carts to play. Congressman Brady’s dedication to finding a cure for PH has raised interest in the Capitol. It’s a fight he has taken up on behalf of Emily Stibbs, a young PH patient and family friend, and in memory of Kristen Cote, who passed away from PH in 1999 at the age of 16. Kristen’s parents, Bob and Anna, remain very involved with the Cure PH fundraisers. The Cure PH Golf Tournament, which is hosted in memory of of Kristen, continues the tradition of awarding the Kristen Cote Memorial Cup, which features the name of each year’s winning team.

After hitting the greens, golfers and friends bid on impressive silent and live auction items while everyone enjoyed dinner. Rino Aldrighetti, President of PHA, spoke to the crowd about the incredible progress our community has made since the first Cure PH Tournament. When this tournament tradition began, he reminded us, there was only one PH treatment available and only 100 treating physicians in the nation. The event has been an important marker of the community’s progress, momentum and success; today there are six FDAapproved PH treatments, with the prospect of more on the horizon, and thousands of physicians treating PH patients across the United States. The hugely successful tournament has raised nearly $1.6 million for PH research since golfers first teed off a decade ago.

Though sundown saw the end of the longest running annual PHA event, the next morning brought the excitement and wonder of a new tradition — the First Cure PH Bug Boil.

“Bugs,” for the uninitiated out there, are actually crawfish. But this was much more than a crawfish feast. (There was deep fried alligator and jambalaya too!) Family and friends had a blast at this uniquely Texan event, which invited the community to come out and learn about PH — and the best way to eat a crawdad. The kids raced crawfish across planks of wood while everyone listened to a zydeco band.

Special thanks and congratulations to event organizers and volunteers — Jack and Marcia Stibbs, Matacha Saul, Cindy Cagle, Jamie Eichelberger and everyone involved in this year’s event. The spirit and energy of the event made it a huge success, and one that’s sure to keep the fight for a cure going strong.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.