Rochester Woman Brings Awareness to Genetic Disease

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Cure HHT, the only US nonprofit organization that supports HHT patients and their families, is happy to announce that Cure HHT member Neeta Pai is hosting the inaugural Cure HHT Team Rochester Walk on May 30. The event aims to educate the public about hereditary hemorrhagic telangiectasia (HHT) and raise funds for Cure HHT, whose mission it is to develop awareness, research, treatment and a cure for people living with HHT.

Had there been awareness, we could have prevented all the heartbreak and trauma my family experienced.

Neeta Pai was diagnosed with HHT in 2010 after years of debilitating nosebleeds and fainting spells, four of which landed her in the emergency room – one even leading to cardiac arrest.

Though she still struggles with anemia, iron deficiency and regular blood transfusion, she continues to dedicate her time to increasing HHT awareness and garnering support for the Cure HHT mission.

“Had there been awareness, we could have prevented all the heartbreak and trauma my family experienced,” Neeta said. “I am now dedicated to spreading awareness about HHT, both to the general community and medical community. If we all join together to support Cure HHT, there will be less people who have to go through ordeals like I did.”

It’s events like the Cure HHT Team Rochester Walk that make it possible for people with HHT to build support systems, learn about medical resources and connect with the organization, all of which enables them to continue moving forward despite the diagnosis, said Cure HHT Executive Director Marianne Clancy.

“Without events like the walk, Cure HHT would not have the funding it needs to grow treatment centers, partner with pharmaceutical companies for drug tests or provide research grants,” Clancy said. “We depend on people like Neeta to spread the word of Cure HHT so people know they have somewhere to turn.”

What: Cure HHT Team Rochester Walk
When: 9 a.m. to 12 p.m., May 30
Where: Soldier Memorial Field

About Cure HHT:
Cure HHT is the ONLY 501(c)(3) non-profit organization in the world committed to bringing together international thought leaders, working collaboratively to find a cure for HHT. Cure HHT is also the sole provider of HHT education programs and resources for patients and physicians worldwide. For more information, visit

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Christine Kirkley
Cure HHT
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Lauren Linhard
Cure HHT
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