NERGG, Inc., 2005 Annual Meeting Summary
The NERGG Annual Meeting was held on December 1-2, 2005 at the New England Center in Durham, New Hampshire. Once again, surrounded by a warm and festive environment, attendees enjoyed two days of educational and inspirational programming. 86 individuals, including genetic counselors, state public health employees, physicians, nurses, social workers and consumers of genetics services, joined us over the course of the two-day meeting. Our opening day focused on The Business of Genetics. Tom Brewster, MD, Principal Investigator of The Regional Genetics Services/Newborn Screening Collaborative, provided an update on the progress of grant activities. Kira Apse, MS and Jessica Goehringer, MS, both genetic counselors, spoke about the process of genetic counselors securing state licensure and the status of this, both regionally and nationally. Billing and reimbursement for genetic services is always an issue for providers and consumers; Leslie Cohen, MS discussed the current status of this topic. At the business meeting, Barbara Lerner, MS from Massachusetts was named the new co-director, while great appreciation was shown for Leslie Ciarleglio, MS who completed her three-year term as co-director. Wendy Ricker received the Allen C. Crocker Award. Muin Khoury, MD, PhD gave the keynote address on Public Health Genomics in the 21st Century. After dinner, a clinical genetics presentations session was held.
Friday’s meeting began bright and early. Participants could converse over breakfast in the dining room or attend a breakfast presentation hosted by Genzyme Therapeutics on The Genetic Causes of Cardiomyopathy. Friday’s agenda focused on Genetics and the Heart: In the fetus, child and adult. Alan Friedman, MD and Louise Wilkins-Haug, MD, PhD each lectured on varying fetal cardiac issues. We then learned about congenital heart disease in the infant or child from Ron Lacro, MD. Perhaps the highlight of the morning was the panel of parents, who have children affected with cardiac conditions, and hearing how they learned this information about their child. Their talks were revealing, honest and inspirational. Leanne Haskin-Leahy, MS gave the genetic counseling perspective on this panel. After lunch, we focused on adults with heart disease. Bill Hopkins, MD spoke of transitional issues, Kathy Economy, MD, addressed maternal heart issues during pregnancy and lastly we heard from patient panelists on living with heart conditions. They shared with us candid vignettes which opened our eyes to their reality.
We would like to thank Leslie Ciarleglio and the Planning Committee, which included, Sue Berg, Tom Brewster, Leah Burke, Mary-Frances Garber, Cindy Ingham, Marge MacDowell, and Barbara McNeilly