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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 skype 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 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 the Jan 2013 and Jan 2011 Newsletter for details
  • Learn about FODs and how our Group began via our Videos
  • Volunteers Needed: Newsletter Formatting, Family Fundraisers, Grant Writing ~ Contact Deb
  • Deb offers local probono Grief Support for Bereaved Parents & other adults living with loss
  • 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. Our 2014 USA Today banner will be in the week of July 21-25 honoring Auddie and Kayla! Please share our Banner ad! Spread the word and be sure to check out our Awareness items to share with family & friends every day of the year!

 

What's New?

Join the Registry

  • ***UPDATE! Our 2014 FOD/OAA National Metabolic Conference for Families, Professionals and Exhibitors is Friday, July 25 and Saturday, July 26, 2014 at the Crystal Gateway Marriott in Arlington, VA!
  • THANK you to all of our 2014 Conference Sponsors ~ without you we wouldn't be able to offer this fantastic opportunity!
  • Registration is CLOSED! You can view our Conference and Speaker Agenda.
  • Our Hotel, the Crystal Gateway Marriott, is no longer able to offer the discounted rate - that deadline was July 7. The Conference meetings are at this Hotel. You can call Reservations toll free: 877.212.5752 or Local: 506.474.2009 and still get a room at their regular rate or search for nearby Hotels.
  • Hotel Shuttle Info from airport to/from hotel
  • If you are interested in becoming a Conference Sponsor or Donor please contact Deb or Kathy Stagni (OAA Director).
  • Speaker Slides will be posted on our Conferences page as I receive them!

    Our July 2012 National Metabolic Conference was in Portland, Oregon. What a wonderful 2 days of learning and connecting ~ pictures are in the Photo Gallery! Here is our ending ceremony slideshow created by an OAA mom ~ it's wonderful! And our Speaker Presentations.
  • The FOD Group announces our own FOD Connect 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.             
          ••• 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 Connect 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!