of IFF

by Gary Huffaker, M.D., Board Chair

 The IFF was founded in 1987 at CHLA. The founding executive director was Nancy Mansfield, a vital member of the Institute until her untimely death in 2010. In order to put her contribution into historical perspective, we must understand the important participation of Dr. Linn Murphree, the director of the pediatric ophthalmology and Retinoblastoma International programs at CHLA. Dr. Murphree had come to CHLA in 1978 after completing three fellowships in human genetic diseases. From the start, he had an intense interest in retinoblastoma, an often-hereditary cancer of early childhood that threatened severe visual loss or even death if left untreated. Since that time, he has done basic and clinical research on retinoblastoma and cared for many patients with this serious eye disease. His curriculum vitae include hundreds of lectures and over seventy peer-reviewed publications in professional journals.

In 1980, shortly after arriving at CHLA, Dr. Murphree became acquainted with Nancy Mansfield through his practice with retinoblastoma patients. After working with her in a local non-profit organization for several years, both Nancy and Dr. Murphree founded the IFF at CHLA in 1987 with Nancy acting as executive director and Dr. Muphree as the medical consultant. The formation of the IFF was a direct result of a parent support group that had spontaneously formed among Dr. Murphree’s patients, based on their perceived need of special support during the crisis of retinoblastoma treatment.

Thus, the IFF has always been oriented to offering counseling and support to families whose child had recently been diagnosed with devastating eye disease. Eventually the Institute began to support families at CHLA whose child had serious visual loss of any cause, including catastrophic developmental abnormalities. Nancy’s guiding principle was delivering bad medical news in a “professionally kind” manner (Retinoblastoma International website).

Dedicated and passionate, Nancy led the Institute with both style and substance. Her connections with the philanthropic community in Los Angeles procured independent funding for the organization without need for any state or federal support. Though she was officially an employee of CHLA, the Institute did not require financial support from the hospital and her “can-do” attitude seemed to conquer all barriers. I met her at the reception for Dr. Murphree held on April 15, 2010 after his Costenbader lecture in Orlando, Florida at the annual Association for Pediatric Ophthalmology & Strabismus meeting. Our discussion that evening was about Dr. Murphree’s contribution to caring for the emotional needs of families in medical crisis in light of the keynote address he had just delivered at the conference entitled “The Care of Families with Catastrophic Childhood Vision Loss (Murphree, 2010).” The lecture was not a surprise for me since I knew of Dr. Murphree’s interest in this subject, but it was a landmark address for such a meeting. It was one of the first instances I could recall where the emotional turmoil experienced by the family and patient during a medical crisis were considered important enough to be highlighted at a professional pediatric ophthalmology conference. In November 2010, Nancy suddenly and unexpectedly died leaving the Institute without a full-time director. In 2012, Elva Tamashiro, who has an M.A. in Child Development, was made director of the IFF. Currently, the team also includes Paula Denney, a Marriage and Family Therapist. They continue to offer consultation and family therapy for families and children with serious eye disease. In February 2012 Dr. Jonathan Kim joined Dr. Murphree as a junior associate. Currently he is assuming most of the day-to-day patient care as Dr. Murphree transitions into retirement