We depend on people like Sarah and the staff at UNC to spread the word of Cure HHT so people know they have somewhere to turn.
Chapel Hill, NC (PRWEB) March 12, 2015
Cure HHT, the only US nonprofit organization that supports HHT patients and their families, is happy to announce that UNC Health Care is hosting the 2nd annual Cure HHT 5K Walk/Run.
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.
Registered walker Sarah Duquette was diagnosed with HHT only last year. She inherited the disease from her mother, and all three of her children carry the gene mutation that causes HHT.
Sarah said her mission is to raise $1,000 over the next month because awareness is the key to saving lives. It is events like the Cure HHT 5K Walk/Run that make it possible for people with HHT to find the right treatment, which enables them to continue moving forward despite the diagnoses.
The hope is that such awareness events can dramatically raise the 10 percent diagnoses rate in HHT patients, said Cure HHT Executive Director Marianne Clancy. As it stands, only 170 of the estimated 1,700 people in North Carolina with HHT know they have a disease.
“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 hold focus groups,” Clancy said. “We depend on people like Sarah and the staff at UNC to spread the word of Cure HHT so people know they have somewhere to turn.”
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 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 http://www.curehht.org.
Contact Christine Kirkley at 301-537-7523 for details or to set up an interview.