Assessment and Resource Development for the NC Neurofibromatosis Support Group

Posted on May 30, 2011

Amy Furches Blevins, Class of 2011

Amy Furches Blevins

CAPSTONE

Capstone Project Committee: Sonja Eubanks, M.S., CGC, Sat Gupta, Ph.D. (Statistical Consultant), Megan Mortensen, M.S., CGC, Suresh Nagappan, M.D., Pamela Reitnauer, M.D., Ph.D., MPH

Background: The purpose of this study was to determine, with the use of a needs assessment survey, the support needs of individuals in North Carolina with neurofibromatosis (NF) and their family members.

Methods: Participants were recruited through e-mails sent to members of the Children’s Tumor Foundation and NF Inc., and at a NF symposium at Duke University.

Results: The majority of participants indicated that they would be interested in attending face-to-face meetings of the group. Participants showed interest in resources such as educational and developmental resources, activities such as NF conferences and symposiums, and small group discussions. They were also interested receiving advice from other parents and discussion of certain topics such as research updates and coping with NF.

Conclusions: By analyzing the data that was obtained from the needs assessment, interviewing leaders from CTF and NF Inc. and reviewing the literature on group implementation and maintenance, recommendations were made for development of the NC NF support group.

Since Graduation

Amy Furches Blevins Alumni Update 2011

After graduation, Amy worked as a clinical counselor at the Genetics Center in Orange, California, seeing patients in prenatal, pediatric, and craniofacial clinics. She then worked as a peds counselor at Carolinas Medical Center in Charlotte, NC. For the past 6 years, she has worked remotely for GeneDx as a senior GC on the Clinical Genomics Team, where she is involved in report writing, abstracting, and training of new hires. 

Amy lives outside of Charlotte, NC with her husband and three children – Clementine (8), Gus (6), and Winnie (3).

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