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About Us

We are an All Volunteer national and international support group specifically for Fatty Oxidation Disorders. As a 501c3 non-profit corporation [Tax ID# 83-0471342] we raise funds for Educational and Networking Services and Programs, as well as for future Regional MeetUps/Seminars for our Families and free of charge Grief Support for bereaved parents, families and others living with loss due to death from any cause.

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Yellow Roses

History & Mission

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 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.

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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

The Story Behind Our Logo & Colors

The Logo

Dan and I began the MCAD Family Support Group in 1991 to honor the memory of our 21-month-old daughter, Kristen, who had died suddenly on July 21, 1985 at our home in Champaign, Illinois, from what doctors initially called Reye’s Syndrome. By 1991, we had already been working through our daughter’s death from undiagnosed MCAD and our son’s diagnosed MCAD for almost six years and five years, respectively. During those years, we felt as if we were the only ones in the world dealing with this disorder, but we just knew there had to be others out there going through similar experiences.

 

After discussing our concerns with Dr. Charles Roe, a metabolic specialist and researcher who diagnosed Kristen (one year post-mortem), Kevin (at birth), and Brian (an MCAD carrier), we embarked on a journey to connect all the MCAD Families across the United States. Dr. Roe’s encouragement helped us get started. To maintain confidentiality, Dr. Roe mailed our ‘introductory’ letter to all the families that had been diagnosed through Duke University Medical Center, which was where he was doing MCAD research at the time. He then moved to Baylor University Medical Center as Medical Director of the Institute of Metabolic Disease in Dallas, Texas. He had been our Medical Advisor for the Group since 1991, up until his unexpected death a few years ago. We miss him greatly.

 

When we first began with our 10-15 MCAD Families in 1991, we did not have an established logo to distinguish our Group. I (Deb) had first thought about using a simple rose design that my sister-in-law had drawn for me to symbolize my own journey through grief, but I felt that it did not fully reflect the larger Mission of the Group, which was to connect and emotionally support all of the MCAD Families in the U.S., and maybe someday across the world!

 

In 1996, after we had expanded our Group to include all of the Fatty Oxidation Disorders, we sent out word to our 250+ Families to help us create a Logo that would embrace the essence of what we were trying to convey as a now international FOD Family Support Group ~ that ‘We Are All in This Together!’

 

In our July 1998 Newsletter issue, we ‘unveiled’ a design created by Melanie and Dell Ruff of Richmond Hill, Georgia, whose daughter, Anna, has MCAD. In their design, the heart and chain symbolize all of our families in the Group connected together in spirit no matter how far apart we live. The ‘broken link’ represents a missing enzyme(s) that each child/adult has that is dealing with an FOD. Their design symbolically demonstrates that despite that missing link in the metabolic process, we are all here to work together, as families and professionals, toward medically dealing with these disorders, as well as emotionally supporting each other.

 

THANK YOU Melanie and Dell for sharing your creativity and truly giving meaning to being ‘All in This Together!’

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The Colors

Some may wonder why royal blue and yellow were chosen as the FOD Group ‘colors.’ The power and meaning of these colors represent many facets of my life experiences before and after our lives were changed forever with the sudden death of our daughter, Kristen, from undiagnosed MCAD in 1985.

 

Before getting married and starting our family, Dan and I graduated from the University of Illinois (‘The Fighting Illini’) in Champaign, IL and the school colors are blue and orange. I wanted to incorporate our loyalty to the symbol of Illinois ~ ‘Chief Illiniwek’ ~ which embodies dignity, integrity, strength, and spirit by having blue as one of the colors ~ but probably more poignant for me is that Kristen’s eyes were the bluest of blue ~ thus I chose royal blue. And even though I grew up in the south suburbs of Chicago, I consider Champaign to be home ~ and it’s also where Kristen is buried.

 

As for the yellow ~ I have always loved small yellow roses and Kristen came to love them as well. Yet after Kristen died, they became even more significant to me. They not only symbolize my journey through grief, they also symbolize Kristen’s love and eternal light ~ a light that will shine forever… 

 

Deb Lee Gould, Director, FOD Family Support Group

FODSupport.org logo

Board of Directors & Medical Advisors

Board of Directors

  • Deb Lee Gould, MEd, FOD Parent, Director & Grief Consultant, and President

  • Daniel R Gould, PhD, FOD Parent and Treasurer

  • Mary Lingle, FOD Parent, Webmaster and Secretary

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Honorary Directors

  • Kevin Gould, MCAD Adult

  • Brian Gould, MCAD Sibling

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Board of Medical Advisors​

  • Charles R Roe, MD, In Memory, Dallas, TX

  • Mark Korson, MD, VMP Genetics, LLC  Atlanta, GA

  • Jerry Vockley, MD, PhD, Children’s Hospital of Pittsburgh, Pittsburgh, PA

  • Stephen G Kahler, MD, UAMS (Little Rock) & Univ of KY (ret), Little Rock, AR

  • Gary Siskin, MD, Albany Medical College, Albany, NY

  • Andrew Morris, PhD, FRCPCH, Royal Manchester Children’s Hospital, Manchester, UK

  • Arnold Strauss, MD, University of Cincinnati College of Medicine (ret) , Cincinnati, OH

  • Barb Marriage, PhD, RD, Professional Nutrition Consultant, Ontario, Canada

  • Janice Fletcher, MD, FRACP, FRCPA, Women and Children’s Hospital, North Adelaide, Australia

  • James Gibson, MD, PhD, Specially for Children, Austin, TX

Financial Info

Our Federal Tax ID # is 83-0471342.

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Thank you to all that have helped us over the years (gifts were not tax deductible prior to Jan 1, 2007 when we finally became a tax-exempt 501c3 nonprofit) so that we may continue to provide our support and information to Families and interested professionals free of charge. Your generosity helps to cover daily operational costs, website fees, phone calls to new FOD Families (US and abroad), probono Grief Support, MeetUp/Forum costs, etc.  At the end of the year we also use some of our Unrestricted Funds to donate to active FOD Researchers and Clinical Educators - we have their links on our Donate page if you choose to donate directly to their efforts.  We have no paid staff so funds are not used for administrative salaries. THANK YOU from ALL of us for your generosity!

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Please Note: We do not email any mass solicitations for support so if you receive an email that looks like it came from me (Deb), do not respond. We also do not make any mass phone solicitations ~ so please do not respond to someone claiming to be calling on behalf of the FOD Group! The only Letter we have for donations is our ‘Annual ‘FOD Letter of Giving’ ~ please share with your Family & friends!

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