I am an Administrative Services Coordinator/Project Assistant for the Molecular Otolaryngology & Renal Research Laboratories (MORL). I support both arms of MORL: the Clinical Diagnostics Services and the Research Division by assisting with grants, IRBs, ACURFs and other regulatory needs. I also assist with Human Resources needs here at the laboratory, maintain the website, develop databases and create organizational infrastructure. I organize our weekly Renal Group and Hearing Group multidisciplinary meetings where every patient's Genetic Renal Panel result or OtoSCOPE result is discussed within the context of their clinical history and where all email inquiries and requests for consultation are reviewed. I am the administrator for our online Renal Complementopathy Database, where physicians can upload patient information and request a consultation or request possible research involvement for their patients with C3GN or DDD. I am the coordinator for our Hearing and Renal studies and I interact with the patients who participate in our studies as well as the providers caring for them. One of my most rewarding duties as part of the MORL is to be the primary coordinator for our aHUS Family Conference which takes place every other year and to assist Jori Hendon with the annual C3G family conference.
Every other year, the MORL in association with the aHUS Foundation co-sponsors a family meeting for persons with the rare kidney disease, atypical hemolytic uremic syndrome (aHUS). The conference is attended by over 100 persons with aHUS and their family members as well as over 40 UI/UIHC staff members. Because aHUS is a rare disease, people come from all over the country to attend where they learn about the latest in aHUS diagnosis, treatment, transplantation, genetics and the research into aHUS that is ongoing in the laboratory. At this conference, I and other members of the MORL get the rare opportunity to sit down with these remarkable individuals, connect with them and hear their stories.
To the people outside the MORL who call, I am the “voice” of the MORL, here to help you.