My Years in NF Research
Patricia Birch, BSc, MSc RN, Clinical Associate Professor, Department of Medical Genetics, University of British Columbia
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In 1990, I became involved in NF research, when Jan Friedman hired me to help develop and run the international NF database (NFDB), funded initially by the (US) National Neurofibromatosis Foundation, then under the leadership of Peter Bellermann. At that time, it was a small NF research community and I was privileged to get to know many of them in the following few years. As a nurse, with a statistical background, nobody seemed to worry that I didn’t have the “right” credentials. Rather, I felt welcomed into a group where there was a sense of discovery, enthusiasm, collaboration, and cohesion that really drove us all forward to learn about NF.
At that time, in Vancouver, we also had a new patient group, the British Columbia Neurofibromatosis Foundation (BCNF). BCNF was founded by Paul Ralfs in 1985 at the urging and mentorship of Dr. Judy Hall – it would be remiss not to mention Judy’s impact on families with NF in British Columbia. BCNF did stellar work to raise the importance of both supporting families and promoting NF research across Canada under the initial skilled guidance of Cynthia Turley, and later by Desirée Sher.
Probably the most important concept that I took away from these years was the invaluable link between researchers and families. The close links we formed with what is really a small number of NF families in our region, ultimately resulted in a strong NF clinical research unit in the Friedman Lab, where all of us, including many graduate students, we were inspired to work hard to answer questions about the natural history of NF1 and NF2 that were raised by members of the BCNF and others. This model of involving family in clinical research is one that has influenced me in all areas of my genetics career.
Although I’m no longer involved in NF research, it is a delight to continue to meet clinicians and researchers from the NFDB days, and the many NF families who have remained in touch for over 30 years.
Patricia Birch
Clinical Associate Professor
Department of Medical Genetics
University of British Columbia
