The FOD (Fatty Oxidation Disorders) Family Support Group™ was ‘born’ in 1991 as a way of dealing with the sudden death of our 21-month old daughter, Kristen, in 1985 from undiagnosedMCAD. Initially, she was ‘diagnosed’ with Reye’s Syndrome and it was not until one year later, when our son Kevin was born and diagnosed with MCAD that we discovered Kristen also had this rare metabolic disorder. Our third child Brian, is a carrier of MCAD and not directly affected. To say the least, our family has been changed forever by this genetic disorder.
Our mission is clear…to connect and network with FOD Families and Professionals around the world and to provide emotional and grief support, Family Stories, practical information about living with these disorders, and Medical Updates to inform families of new developments in screening, diagnosis, research and treatment. In early 2010 we expanded our Mission and grief support to include face-to-face support for any bereaved parent/families in the East Lansing, MI area, not just those dealing with our disorders.
Awareness of these disorders is imperative for early diagnosis and treatment, prompting us to be strongly committed to promoting expanded ~ universal and comprehensive ~ newborn screening for FODs (and several other metabolic disorders). We do not want other families to needlessly go through what we have experienced.
From our family to yours, we want you to know…
‘You are NOT alone! We Are All in This Together!’
Deb & Dan Gould
Kristen, Kevin & Brian