April 2003

Dr. Susan Hayflick’s NBIA research team at the Oregon Health & Sciences University in Portland, Ore., has a new genetic counselor to work with families who have a NBIA diagnosis: Allison Gregory. She will work part-time and joins genetic counselor Jason Coryell, who also is on the team and attending medical school.

Gregory’s work has been in prenatal diagnostic settings, most recently at Cedars-Sinai Medical Center in Los Angeles. Working as a genetic counselor in a research setting is a new and interesting challenge for her, she said. She will help coordinate family involvement in research studies and serve as a contact person and resource for families and the medical community. She is also involved in the design and implementation of a new study of a small group of individuals diagnosed with PKAN, a form of NBIA.

Gregory graduated from Stanford University in 1994 with a degree in human biology. She earned a master’s degree in genetic counseling at the Medical College of Virginia. She said she is thrilled to be back in her hometown with her husband. When not working, she enjoys playing competitive tennis, reading, and spending time with her family and two cats.

Gregory can be reached at OHSU by phone at (503) 494-4344 or by e-mail at gregorya@ohsu.edu. Because of her part-time schedule, she may not be available immediately but should be able to respond to inquiries within a week.
 

 
Genetic Counselor to be working with NBIA Disorders Association

By Jason Coryell, M.S.

As the most recent addition to the research team at Oregon Health & Science University, I want to tell you a little bit about myself and how I hope to be working with the HSSA. I have been a genetic counselor for six years, having completed my graduate training at the University of Cincinnati. I recently relocated to Portland, Ore., where I am enjoying the greenery, but fearing that my dog will disappear into a muddy sinkhole if this rain doesn’t let up! When I’m not practicing genetics, I like to swim, read, work crossword puzzles, and study languages (I think I have a 3-year-old’s command of Spanish right now).

For those of you who haven’t worked with genetic counselors, we’re a relatively new breed of geneticist. Our roles in medical care are as diverse as the group of families we serve. Most of us, however, spend our time educating families about genetic technology, gathering family history information, explaining the likelihood of genetic diseases in the family, providing psychosocial support for the family during and after the testing process and serving as a liaison between families and physicians/laboratories.

I am not a physician and cannot make recommendations about treatment or management of a person’s condition. But I try and stay current about approaches to treatment. While I will never truly understand the day-to-day reality of living with HSS, I hope to know about the support and resources needed by families.

As a member of the OHSU/UCSF research team, I will not meet families directly, but I may work with several of you in other ways. I hope to keep families informed about the genetics of HSS through informative articles in the HSSA newsletter. In addition, I may respond via phone or e-mail to families and physicians with specific inquiries about this condition. I will also be maintaining and updating the HSS Registry, a database with contact, clinical, and laboratory information for families interested in participating in research.

When the OHSU/UCSF research team begins new research studies, I will be working with families and their local physicians to make sure that collecting information and specimens is as easy and convenient for you as possible. Basically, just consider me a new resource when you have questions or need to contact us. I look forward to working with all of you!