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UD prof featured at HD symposium Oct. 27 3:33 p.m., Oct. 24, 2006--Eric Kmiec, professor of biological sciences and director of the Laboratory of Genetic Medicine and Genomics at UD, will be a featured speaker at the Huntington's Disease (HD) Symposium, which begins at 8:30 a.m., Friday, Oct. 27, at the Helen Graham Cancer Center on the grounds of the Christiana Hospital in Newark. For driving directions, go to [www.christianacare.org/body.cfm?id=483#Christiana]. Speakers also will include Anthony Lechich, M.D., a senior vice president of medical affairs for the Terrence Cardinal Cooke Health Center in New York City, who has been involved in the development of the center's HD unit for 11 years; Ann Marie Cordori, who has worked in clinical and medical psychology at Yale and Johns Hopkins universities and who is in private practice in Baltimore; and Marilyn Travis Berman, a member of the Morgan Stanley Trust team with more than 36 years of experience in personal trusts, specializing in special needs trusts and serving as a national consultant for estate planning associated with disabled family members. The free, half-day symposium will focus on providing health care professionals, patients and their families and friends with information about HD therapeutics' research, the psychological effects of hereditary disease, associative genetic testing and special needs trust planning for the disabled. The symposium is sponsored by the Delaware Affiliate of the Huntington's Disease Society of America (HDSA). Kmiec and Hetah Parekh-Olmedo, a scientist in UD's Department of Biological Sciences, are cofounders of the Delaware Affiliate of HDSA. “We wanted to focus on helping the families affected by HD,” Kmiec said. “We are part of the national consortium which exchanges information about the latest research on the disease.” Huntington's Disease, which often is masked as Parkinson's or Alzheimer's disease, is an inherited, progressively degenerative brain disorder that results in a loss of mental faculties and physical control. Current estimates are that one in every 10,000 people in the United States has HD, which can involve an army of health-care professionals, including general practitioners, neurologists, social workers, home health aids, psychologists, physical therapists and speech/language pathologists. These health-care costs, coupled with the fact that multiple generations within a family may inherit the gene, can overwhelm a family's financial resources. The disease also takes its toll psychologically, with as many as one-quarter of patients with the disease attempting suicide, Kmiec said. Since there is no known way to prevent or slow the progress of Huntington's Disease, many children of parents with the disease will decline predictive testing for the disease, which can be done with a simple blood test, Kmiec said. More than 6,000 people are estimated to be at risk for HD in Delaware. “The ripple effect that HD creates throughout families and communities is the reason our HDSA Delaware Affiliate has assembled these experts in research, psychology and finance,” Kmiec said. “We must set forth the knowledge that will empower individuals to manage the devastating consequences of HD.” UD undergraduate students, Melissa Warriner, a junior biological sciences major, and Ryan Best, a senior psychology major, also will be attending the symposium as part of their practicum with Kmiec and Parekh-Olmedo for the Delaware Affiliate of HDSA. Warriner and Best will be will be learning how a charitable organization does its business, including setting up meetings and educating the public, Kmiec said. “They will be interviewing a number of patients and families of patients to decide what sort of group support these families will need,” Kmiec said. “For them it will be a top-to-bottom experience about how to organize a template for distributing information about the disease and to assist the symposium organizers in running the conference and interacting with families affected by the disease.” HSDA is a national nonprofit voluntary health agency that provides a national network of services and educational programs through its many volunteer-based chapters and affiliates, numerous support groups and 21 HDSA Centers of Excellence for Family Services. The Delaware Affiliate of HDSA will receive chapter status this month during an official ceremony conducted by the national office in New York City. The Delaware support group of HDSA meets from 10 a.m.-noon, every third Saturday, at the Christiana Hospital. For more information, call Emily Mann at (302) 777-0722. |
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