Family Brings Awareness to Genetic Disease that has Affected them for Generations

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One in 5,000 people are annually diagnosed with hereditary hemorrhagic telangiectasia (HHT), which is as common as ALS and Cystic Fibrosis (CF), but is virtually unknown to the public. Through grassroots events such as the 6th Annual Stoner Open on May 17, the public is educated about HHT and able to raise funds for Cure HHT, whose mission it is to develop awareness, research, treatment and a cure for HHT.

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The good that we are able to do as a result of six successful years of golf outings is truly a great feeling.

Steve Stoner began The Stoner Open Golf Outing in 2010 after taking his inspiration from another golf event he attended with his uncle, David Stoner. Several of the Stoner family members suffer from HHT and the family knew they wanted to do something to raise awareness and funds to support Cure HHT. Steve, his family and friends have raised more than $40,000 toward finding a cure for HHT.

“The good that we are able to do as a result of six successful years of golf outings is truly a great feeling, and makes the many hours of organization well worth it,” Steve said. “It shows that a love for golf, or anything else, can also be combined with the willingness to make a difference.”

While it can take up to 30 years for a person to be diagnosed with HHT, some people are more fortunate because their relationship with Cure HHT has been able to connect them with an HHT Center of Excellence or healthcare professional experienced in HHT, said Cure HHT Executive Director Marianne Clancy.

“It is families like the Stoners who are the real champions for the cause, making a difference by organizing grassroots events like The Stoner Golf Outing and raising money to support our programs and services,” Clancy said.

What: Stoner Open Golf Outing
When: 1 p.m., May 17
Where: Hideaway Hills Golf Club, Kresgeville, PA

Those interested in attending the event or conducting interviews can contact Christine Kirkley at christine(dot)kirkley(at)curehht(dot)org or 410-357-9932.

About Cure HHT:
Cure HHT was founded in 1991 as HHT Foundation International - the epicenter of the national and global effort to advocate for HHT patients and families, raise awareness of HHT, catalyze and sponsor critical research and advance treatments. Though Cure HHT has created nearly 20 Centers of Excellence in the U.S. and Canada to research and treat this devastating disease, research remains woefully underfunded. The National Institutes of Health (NIH) currently spends only half-a-million dollars on research for HHT, but spends as much as $75 million a year each on other rare diseases that affect a similar number of people, such as ALS, Cystic Fibrosis and Huntington’s.

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Christine Kirkley
Cure HHT
+1 410-357-9932
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Lauren Linhard
Cure HHT
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