My wife and I visualize a world without HHT, a world where our children are healthy and happy
San Francisco, CA (PRWEB) May 11, 2015
Cure HHT, the only US nonprofit organization that supports HHT patients and their families, is happy to announce Cure HHT Board Member Angela Carlisle-Brown and her husband, Greg, will be representing Cure HHT at the San Francisco Bay to Breakers race on May 17.
The family 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.
Angela’s co-workers from Kilpatrick Townsend & Stockton, LLP, will join the Brown family and, together, they will represent a community that faces daily hardships from this genetic disease, the likes of which both Greg and his children will continue to experience for the rest of their lives.
Greg has gone through two brain surgeries, three lung surgeries, an abdominal surgery and liver failure as well as daily nosebleeds and weekly iron treatments for the past 10 years. He and Angela’s two children have regular nosebleeds as well as lung and brain issues related to HHT.
Their 10-year-old daughter had lung surgery just last year to stop the crippling migraines caused by HHT symptoms in the lungs.
“My wife and I visualize a world without HHT, a world where our children are healthy and happy,” Greg said. “Cure HHT is the only organization dedicated to finding a cure for HHT. This is a very personal and important cause.”
It’s the awareness efforts like this that make it possible for people with HHT to find support, 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 this support, 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 families like the Browns to spread the word of Cure HHT so people know they have somewhere to turn.”
While it can take up to 30 years for a person to be diagnosed, some are more fortunate because their relationship with Cure HHT connected them to a HHT Center of Excellence or with healthcare professionals with HHT experience. It is these individuals across the country that are championing the cause and making a difference.
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.