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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, International Meet-Ups/ 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

  • Professionals ~ 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 or contact Deb for stock donation info.
  • 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 . If you have an FOD Story in video format and would like me to post on our FOD youtube channel, contact Deb.
  • Volunteers Needed: Newsletter Formatting, Family Fundraisers, Regional FOD Meet-Ups, Grant Writing ~ Contact Deb
  • 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!    
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What's New?

Our 2018 FOD/OAA International Metabolic Conference in Bloomington, MN was a HUGE SUCCESS! We were at the Embassy Suites Minneapolis Airport on JULY 6-7, 2018.

Thank you to Mayo Medical Labs for being our major Sponsor, as well as ALL of our Sponsors!

More details here about our Sponsors and the Speakers' Powerpoint Presentations

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)!

 

  • NEW Services! Physician Support Services ~  "metabolic diagnosis and management through the use of simple & secure technology. Scheduled and/or immediate access with 24/7 back-up for emergency cases are provided, and customized to the needs of the client or clinical program. This kind of service can benefit genetic or metabolic clinics, neonatal ICUs, newborn screening follow-up programs, and other specialty clinics. Also, this service assists clinical programs during faculty absences and vacations, and during position vacancies.Dr. Mark S. Korson is board certified as a Clinical Biochemical Geneticist and has extensive experience in the diagnosis and management of children & adults with a wide array of inborn errors of metabolism, specifically mitochondrial & metabolic disorders."
         
  • 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." Here is the FOD link. 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!

 

  • UPDATE! Our 1st FOD Awareness Month was JULY 2012 and we were also highlighted on July 15, 2013 honoring Kristen and Kevin 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!
  • 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!