Sabine to share thoughts on his courageous battle with "world's cruellest disease"
CHARLOTTE, N.C., Sept. 24, 2013 /PRNewswire/ — In his 26 years as a correspondent for NBC News covering wars, disasters, atrocities and other human suffering, Charles Sabine often put himself in harm's way.
(Photo: http://photos.prnewswire.com/prnh/20130924/PH84687-a)
(Photo: http://photos.prnewswire.com/prnh/20130924/PH84687-b)
But the risks he sometimes felt on the job paled in comparison to the fear he experienced in 2004, when he was tested for and found to have Huntington's disease, or HD.
Sometimes described as "the world's cruellest disease," HD causes the progressive loss of control of movement, thought and emotion, and typically results in death 15 to 25 years after onset of motor signs of the disease.
"What makes HD crueller than any other disease is that not just does it affect every aspect of a personality, rendering the victim unrecognizable to their family, but its unique genetic nature means that those family members are watching this often in the knowledge that they are going to suffer the same fate," says Sabine, whose father died of the disease, and whose brother already is showing its physical symptoms.
Now 53 and the father of two young children, the British native and resident has made it his mission in life to connect physicians, scientists, patients, families, politicians and anyone else who is affected by or cares about HD, and in the process build a global community dedicated to finding better treatment and care of HD patients.
Because anyone who carries the disease form of the HD gene is certain to get the disease, differentiating it from all other diseases, HD is the focus of pioneering work that will have enormous impact for many diseases on issues ranging from research and treatment to care and patients rights.
HD is "a disease of the future," he says.
"It can be researched as no other disease because you can study people before they get symptoms," he says. "And it is a vanguard for so many constitutional issues of the future that are being faced now by HD sufferers, such as who should know you have the disease, who should have information and be privy to it, whether government, or life insurers or employers."
Sabine will be a featured speaker during the upcoming 7th Annual Huntington Study Group Clinical Research Symposium and Workshops in Charlotte. The symposium, workshops, educational and training programs will be held November 7-9 at the Omni Hotel.
Patients, families, caregivers, researchers and medical professionals are encouraged to attend.
This international gathering is jointly sponsored by Charlotte AHEC and the Huntington Study Group, or HSG, an international network of clinical researchers who study and care for patients and families with HD.
Research offers a "crucial beacon of light to families suffering from the disease," Sabine says. "Without it, it would be impossible for people to deal with the disease."
Agenda and Accreditation Statement
Contact:
Mary C. Edmondson, MD, President
HD Reach
919.803.8128
Email
Shari Kinel, Executive Director
Huntington Study Group
585.319.3591
Email