At Work


  • With family members visiting the Universidad del Valle in Cali, Colombia


Late in 2012, while serving as Executive Director of the NFXF, our Communications Coordinator asked me to speak extemporaneously about my work and the work of the NFXF team, as part of an end of the year message. The end product was done without rehearsal or script, but I said what I felt and I meant what I said.

In November 2013 I was invited to join a group of UC Davis California researchers and clinicians on a trip to Colombia, South America. (A story about that trip appears in my blog.) We were accompanied by a documentary filmmaker. This video is a 5-minute “teaser” from the film that he is still editing. I hope you enjoy it and that it gives you a sense of the work we did there and the emotional impact it had on all of us.

Care Circles in a product developed by my friend Faheem Ahmed at software giant SAP. Faheem has a child with fragile X syndrome. Like many parents, he early on became frustrated with the challenge of finding relevant and accurate information about his son’s condition and coordinating his son’s treatment amongst the multitude of involved professionals. Early on in the conceptualization of his Care Circles app, Faheem came to me for advice and feedback. I was honored to be asked and more than happy to provide it. Today Care Circles is seeing increasing use by numerous disability groups and, thanks to Faheem, is available at no cost to those working with children who have special needs.

While visiting UC Davis, one of his implementation partners, Faheem asked some of us to make comments about Care Circles which were captured on this video.