NERGG, Inc., 2006 Annual Meeting Summary
The New England Regional Genetics Collaborative / NERGG Annual Meeting was held November 30- December 1, 2006 at the New England Center in Durham, New Hampshire. Without any threat of snow, attendees enjoyed two days of educational and inspirational programming in a warm, festive environment. 93 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 started with a working meeting of the Regional Genetics Collaborative, with updates from Dr. Tom Brewster, PI of the NE Collaborative and Dr. Mike Watson from the NCC on the regional collaborative programs, Anne Gramiak, MPH on the medical home and transition to adult care, Dr. Rosemarie Smith on Telegenetics in our region, and updates from the project leaders of the NE Regional Genetics Collaborative. Thursday afternoon’s focus was on various aspects of Universal Health Care and insurance coverage. Dr. Bob McAfee gave the keynote address on Maine’s Dirigo Health Initiative, while Senator Stephen Buoniconti addressed Massachusetts Mandatory Health Insurance Coverage. Finally, Laura Tobler, from the National Conference of State Legislatures, reported on what various states are doing to reduce the number of uninsured Americans. At the business meeting, Cindy Ingham, RN from Vermont was named the new co-director, while great appreciation was shown for Marge MacDowell, MSW who completed her three-year term as co-director. Tom Brewster received the Allen C. Crocker Award. After dinner, conference participants chose between a clinical genetics presentations session and a consumer advocacy event, featuring Sharon Terry, President and CEO of the Genetic Alliance. We were thrilled with the number of consumers who attended this special event. Consumer scholarships were provided by the NE Regional Genetics Collaborative HRSA grant # U22MC03959-01-00.
On Friday, Genzyme Therapeutics, once again, sponsored a breakfast presentation on Expanded Newborn Screening. The remainder of the day focused on Informing Patients of a Genetic Diagnosis and How to Provide Optimal Care. Sharon Terry eloquently spoke about Genetic Testing from Family History to High Complexity Testing followed by John Moeschler, MD summarizing Brian Skotko’s work on delivering the diagnosis of Down Syndrome. We then heard from two mothers who shared personal stories about receiving their child’s diagnosis and what happens in reality. Once again, our conference evaluation forms revealed that these patient panels are the highlight of the conference. Following lunch, we heard from Charles Lee, PhD on Chromosomal Micro Array Analysis. Lastly, we had two different provider/patient panels, one addressing hereditary cancer syndromes, the other, the indeterminate diagnosis. These gave the audience a chance to hear both perspectives on these sensitive counseling situations.
We would like to thank Marge MacDowell and the Planning Committee, which included, Sue Berg, Tom Brewster, Leah Burke, Leslie Ciarleglio, Lisa Demers, Mary-Frances Garber, Cindy Ingham, and Cynthia Jackson.