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Welcome to the
FOD Family Support Group

The FOD Group website and online 'Communication Network' Newsletters are intended to be used as a worldwide resource for families, friends, clinicians, researchers and others who would like to support, educate and provide a forum for the sharing of ideas and concerns for those whose lives have been touched by a Fatty acid Oxidation Disorder.

We are an All Volunteer national and international support group specifically for Fatty Oxidation Disorders and a 501c3 non-profit corporation [Tax ID# 83-0471342] that raises funds for the training of new FOD Professionals and for future FOD Research, as well as for our daily operations, National Conferences, and probono face-to-face or online Grief Support for Bereaved Parents, Families, and other adults living with loss from any cause.

Family Stories are shared, questions are answered, nutrition information is discussed, and medical and pharmaceutical updates are offered. You can also view and share our current FOD Brochure and Newsletter, as well as our archive of past newsletters for more information and stories. Additionally, we have videos on how our Group began and how FODs are newborn screened, diagnosed and treated.

If you'd like to become a member of our Group, please 'Join our Group' first ~ then you can also become a part of our very active google Email List and facebook Group of FOD Families/Familymembers and Professionals from around the world ~ come join us in supporting both our new and 'old' families living with these rare metabolic disorders!

            PO Box 54    Okemos, MI 48805  Tax ID # 83-0471342

  • Please share your Expertise! Needed for future Newsletters ~ Professional articles or summaries on your clinical work or research [Drs, RNs, nutritionists, genetic counselors, social workers etc]. Contact Deb.
  • Donations are tax-deductible – we also now accept stock donations! Make a donation
  • As we attend Conferences and expos, our new FOD Banner will help create awareness and educate many about FODs and NBS ~ thank you to MCAD dad, Keith Widmann for designing our banner!
  • Visit our Awareness Items page to purchase FOD bracelets, FOD ribbon car magnets/stickers/window clings, tshirts, ivPolePal and more ~ and our Donate page to find other ways to help raise funds for the FOD Group! All tax-deductible!
  • UPDATE! FOD Study Recruitment: Patients & Families needed - refer to our most recent Newsletters
  • Learn about FODs and how our Group began via our Videos
  • Volunteers Needed: Newsletter Formatting, Family Fundraisers, Grant Writing ~ Contact Deb
  • Deb offers probono Grief Support for Bereaved Parents & other adults living with loss in person or online
  • UPDATE! Our 1st FOD Awareness Month was JULY 2012 and we were also highlighted on July 15, 2013 honoring Kristen and Kevin! Our banner ad was in the USA Today Life Charity Spotlight section. For our 2017 Banner we honor Chelsea (1992-2016,LCHAD) and Josh (14 yrs, GA2/MADD from Australia). Spread the word and be sure to check out our Awareness items to share with family & friends every day of the year!
  • NEW Services! Genetic Metabolic Center for Education~  Consulting & Education Services ~ Clinical Support Servicesto assist medical and dietary nutritional providers in the care of patients with inborn errors of metabolism. They have built a team of experienced metabolic clinicians and dieticians to offer clinical consultative and educational advising in support of those who directly serve this patient population.
  • NEW! One of our FOD family members, Rosemary Forrest, has co-written an exciting new book, Genetic Mistakes: Understanding and Living with Fatty Acid Oxidation Disorders! She wrote this book "because I am one of you, a family member whose wonderful little grandson has an FOD (CPT2). When he was born, his doctor knew nothing about it, but got up to speed quickly. I know others have not been so fortunate. I looked for information and it was complex, confusing, contradictory, and frightening. I am a science writer and one of my daughters is a scientist, so we decided to do something about this for others."                                                             
  • So please be sure to check out this wonderful book either on amazon or through the publisher ~ and when you purchase through our FOD amazonsmile link we also receive a donation!    




What's New?

NEW! Our 2018 FOD/OAA International Metabolic Conference will be in Bloomington, MN ~ the date is JULY 6-7, 2018 at the Embassy Suites Minneapolis Airport!

FOD Conference REGISTRATION is CLOSED!!! We filled our maximum sooner than we thought! If you would like to be placed on a Wait List please email deb@fodsupport.org

You will need to make your Online Hotel Reservations EARLY because there is another major event in town on that date. We have filled all our rooms in our block - you may need to either pay the higher room costs or stay at a nearby hotel and come to the Embassy for the Conference talks.

Thank you to Mayo Medical Labs for being our major Sponsor!

If you decide to call the Hotel at 952.854.1000, be sure to tell them it's for the FOD/OAA Conference - give them the Group code 'FOD' so you get our Room Block Discount - $129/night + tax for a king size bed or $139/night + tax for 2 Double beds. If they say the block is full then you will need to pay a higher price for a room there or make a reservation at a hotel nearby.

Registration IS CLOSED!

Please make your HOTEL Reservation FIRST before completing the Online Conference Registration Form - some questions on the form are dependent on whether you are staying at the Embassy or another hotel. Every person age 3 and older needs to be registered so we have accurate food counts. Age 2 and under do not need to be registered .  Please complete by June 20th so we can give the hotel our food counts.   

Breakfast for Friday and Saturday from 7-8am is included in the Hotel reservation (others staying elsewhere will need a voucher from us) ~ we will have a reserved room for Breakfast. A Buffet Lunch will be served on Friday July 6th and a Box Lunch on Saturday the 7th for ALL Registrants. There will be a Friday Night Reception for Families and Professionals from 6-9pm. A voucher will be needed for those not staying at the Embassy. The main Conference runs from 8-5pm Friday and 8 - 2pm Saturday July 7, 2018.

FOD Families ~ start SAVING so you can be a part of this wonderful learning and networking experience! More details here!

You can read more about our past Conferences (also click view details)






NEW! Excellent article honoring Dr Charles R Roe, one of our FOD research/clinical experts (retired from clinical FOD practice)!


  • Thank you to our premier 2016 FOD/OAA International Metabolic Conference Sponsor/Host The Metabolic Clinic at Children's Hospital Colorado and University of Colorado School of Medicine   and  THANK YOU to ALL of our Sponsors ! We hope to see many new faces for our 2018 Conference ~ the site is yet to be determined!

    Check here for the 2016 Conference summary

  • If you are interested in becoming a Conference Sponsor or Donor for our July 2018 Conference please contact Kathy Stagni (OAA Director).

    Join the Registry

  • The FOD Group announces our own FOD Registry!
    We invite all FOD patients to join (click the CONNECT picture above) ~ to provide de-identified medical information to the registry to help everyone in the global FOD community ~ patients, families, researchers, clinicians, and pharmaceutical companies ~ to learn more about Fatty Oxidation Disorders. The goal is improved diagnoses and medical care, as well as empowerment of patients and families through knowledge, connections, and support.  Watch a short video that explains WHY Families should join!   PatientCrossroads/AltaVoice has now been acquired by Invitae  ~ please join the 'Patient Insights Network℠ ~ the 'Power of PIN!'        
          ••• FOD Adults 18 yrs+ can join on their own ~ if an FOD child is under 18 yrs old or if he/she is over 18, but does not have the ability to answer the questions for themselves, then parents and guardians can join. Parents of a child/children that have died before or after an FOD diagnosis can also register. •••
          If you have any questions about the FOD Registry, or to opt in, please feel free to contact us with any questions. Help our researchers find answers to help you ~ join our FOD Patient Registry and participate in future trials and studies!
  • We have created a partnership with Rare Patient Voice, LLC, that offers our Family members a chance to have their voices heard via "surveys and interviews to improve medical products and services." And it also is a way to help support the FOD Group. Please read about Rare Patient Voice and learn how you can help our Families and Medical Professionals!