NICER Consortium



The NICER Consortium is grateful to have the enthusiastic and generous support of the Kovan Family, who share in the goals in re-shaping the future treatment for rare immuno-hematological disorders by advancing science and optimizing clinical care. Driven by their personal experiences, as detailed below, the Kovan Family has demonstrated an unwavering commitment to enhancing the resources of the NICER community.

Dear NICER Community –

Our world was shattered 30 years ago when our beautiful two-year-old son, Jonathan Scott Kovan, died from a malignant brain tumor. Just one year earlier my wife Ilene and I had been the exuberant parents of a vivacious boy who was just learning to walk and talk. Now we were bereaved and broken, and our lives were forever changed. Our son’s life was not long, but it was meaningful. He made me a father and he made Ilene a mother. His love enriches our lives – and the lives of his five younger sisters whom he never met – to this day. But we wanted Jonathan’s impact on this world to be wider and larger than our immediate family, and so in January 1989 we established the Jonathan Scott Kovan Memorial Fund at Children’s Hospital of Michigan, with the hope that other families with ill children could receive life-saving medical care. Donating to this fund year-in and year-out has been a tremendous comfort to us.

Our relationship with the Michigan hospitals has continued not only because of this fund, but for another shocking reason: in 2005 – 16 years after Jonathan’s death – our eldest daughter Elizabeth, was diagnosed with a rare malignant tumor of her leg. Elizabeth’s prognosis was dire and the path to a cure was uncharted, but the University of Michigan C.S. Mott Children’s Hospital and Elizabeth’s beloved oncologist, Dr. Linda McAllister-Lucas, refused to give up. Fourteen years later, we are thrilled to report that Elizabeth is thriving. She is a graduate of the University of Michigan and is currently pursuing a career in medical research in Chicago.

Research and treatment for rare disorders have changed dramatically since Jonathan’s diagnosis, and even since Elizabeth’s diagnosis. One major innovation: biorepositories, which allow doctors and researcher to quickly and easily share information about patients to improve diagnoses and optimize outcomes. We have established the Jonathan Scott Kovan Biorepository within the NICER Consortium with the goal that it will give doctors the insight they need to successfully treat patients with rare illnesses. We donate to this project in memory of Jonathan, in honor of our brave and bright daughter Elizabeth, and in tribute to all families facing the harrowing reality of the unknown in rare immuno-hematologic diseases.

Sincerely, Ilene & Bruce Kovan and family

NICER Member Institutions