The FOD Family Support Group™
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 undiagnosed MCAD. 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 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. We also raise funds to help train new FOD Clinicians (Drs, metabolic nutritionists, etc.), and for FOD Research endeavors.
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) ~ possibly through future regional testing centers. 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
Now available ~ Blue and Yellow and TieDye FOD and Newborn Screening Awareness Wristbands and Static Cling 'Magnets'. Click here to visit our web site and place your order.
For more blue and yellow awareness products, visit our blue ribbon and yellow ribbon categories.
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