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 international support group 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 Grief Consults for Bereaved Parents and Families in the East Lansing, MI area.

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

What's New?

• ••• Calling ALL FOD Families  and   Affected Adults! •••
        The FOD Group has a wonderful opportunity to assist a biotechnology company that is beginning some early product development work in rare and untreated fatty acid oxidation disorders that may eventually lead to some new treatments for some of the FODs. 
        But we NEED YOUR HELP by completing a SURVEY by JUNE 1st ~ and with each completed Survey the FOD Group will receive a donation!
        Below is the Survey information ~ it is ONLY for FOD FAMILIES of living or deceased children/adults in the US, Canada and Overseas with or without a name for their specific FOD ~ and NOT for Professionals.
        Also if you know an FOD Affected Child’s Family or an FOD Affected Adult, please pass this Link along to them. We are trying to reach as many as possible.

  We would like input from Parents of FOD affected minor children (also for their affected age 18+ adult that CANNOT answer for themselves), Adoptive Parents, Legal Guardians (ie., that might be a grandparent, aunt etc), and FOD Affected Adults (age 18+ that CAN answer for themselves).
        This Survey will also assist our Group in gathering information that will be helpful when we write grants in the future (ie., location in the world, # of hospitalizations, ethnicity, where your Drs are located, etc) to help with funding for our Conferences or other projects.
        Even if you have been told it MAY be an FOD or a combination of FOD and mito or Unclassified FOD, but you don’t have a SPECIFIC name to your disorder yet, please feel free to complete the Survey. An FOD diagnosis HAS to be a possibility though.
       ALL info is private (unless you give them permission to contact you) – and when I receive the info related to grant writing NO NAMES, etc will be attached.

  FOD SURVEY by June 1st!

• UPDATE! Our 2014 Conference most likely will be in Washington, DC ~ so start saving now! Details will come later in 2013.  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.
• UPDATE! Our 1st FOD Awareness Month was JULY 2012! Our [black & white] Charity Spotlight banner ad was in the July 16th USA Today Life section. Please also share our FOD color banner ad! Spread the word and be sure to check out our Awareness items to share with family & friends every day of the year!
• 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
• 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
• Coming soon ~ We are enhancing our Family and Professional Lists in order to have the most up-to-date networking info!
• 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, ribbon window clings, tshirts, ivPolePal and more ~ and our Donate page to find other ways to help raise funds for the FOD Group!