I recently attended the annual ULF Family Conference. In a historical precedent the conference was held this year outside of Dekalb, IL for the first time since the inception of the ULF. The conference was held in Baltimore, Maryland from July 31st through August 2nd, 2014. The turnout this year was the highest that I can recall in recent memory. It was nice to see the upswing in attendance and I can only hope that it is a continued trend.
It was great to see everyone again, meet new folks, and re-connect with some that I haven’t seen in a while. The venue was great and despite the added logistics of having it in a new location for the first time ever, Kirsten, Nancy, and the rest of the staff, board members, volunteers, etc. made it a tremendous success. Early feedback from attendees is overwhelmingly positive. The final night of the conference was capped off with a cruise around the Baltimore Inner Harbor where a great time was had by all.
I was also fortunate to meet the rest of the Medical Science Liaison(MSL) Team from Retrophin. Like the rest of the individuals from Retrophin that I’ve met, I was left with a great feeling about the future for diagnosed, and yet to be diagnosed CTX patients. They are as passionate as I am about raising awareness, diagnosis, treatment, and newborn screening for CTX patients. I look forward to working with them in the future in whatever capacity I can to facilitate their efforts.