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.
Become a member by joining our group.
We also have an active Google email list and Facebook group of FOD Families and professionals from around the world, supporting both our new and 'old' families living with these rare metabolic disorders!
Stacey Webber’s new book, Crazier Things Have Happened, is her journey to motherhood through the world of infertility and other life challenges. She is donating $1 of every book sold to the FOD (Fatty Oxidation Disorders) Family Support Group, as
Check out our new welcome kit! Great info for our new family members as well as any member who has been here for a while. Download the file.
Professionals ~ Please share your Expertise and your Research/Clinical work on our website! 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, Lapel Pin 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 for BOTH Studies – refer to below and our past Newsletters. 2023 MCAD Study (medication Triheptanoin) ~ Children’s Hospital of Pittsburgh of UPMC Division of Genetic and Genomic Medicine is looking for patients
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
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
Excellent article honoring Dr Charles R Roe, one of our FOD research/clinical experts (retired from clinical FOD practice)!
Deb offers probono Grief Support for Bereaved Parents & other adults living with loss in person (Okemos, MI) or online via zoom video (only for US).
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
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
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 honored Chelsea (1992-2016,LCHAD) and Josh (14 yrs, MADD/GA 2 from Australia). And for the
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!
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 face-to-face or Online Grief Support for bereaved parents, families and others living with loss due to death 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.Read more
Latest MeetUp/Conference Info
FOD and OAA Family Forum Join us for an exciting and informative FOD and OAA Family Forum! This in-person event will be held at the Wyndham Pittsburgh University Center in Pittsburgh, PA, USA. To kick off the Family Forum there will be a Reception
Receiving a diagnosis for a rare genetic metabolic deficiency can be very frightening for a family, especially if they know nothing about the disorder. Gaining information about an FOD is a positive step toward easing some of that fear ~ you have to know what you're dealing with medically before you can put all other ramifications in perspective. It IS possible to live a long and healthy life with an FOD ~ the KEY is diagnosing/treating it as early as possible ~ and with FODs now being screened for at BIRTH in many states/countries, more and more babies' lives are being saved!Read more
When diagnosed and treated AT BIRTH the prognosis for most of the FODs (i.e., MCAD etc) is excellent. Most can make adjustments to diet/meds when necessary during times of extra activity and illness and lead a full life. However, if undiagnosed and untreated, these disorders can lead to serious complications affecting the liver, heart, eyes and general muscle development, and possibly death.Read more
Show your support with our FOD ribbon magnets, stickers, window clings, awareness bracelets, t-shirts and baseball hats!Read more
Our Group began in 1991 as the MCAD Family Support Group and then in 1996 we expanded to include all of the Fatty Oxidation Disorders (FODs). Family Stories of LCHAD, VLCAD, CPT and other FODs begin with the June 1995 issue. In our early years, when each new Family contacted us, we used to mail out a Family Packet of past newsletters ~ but, we have discontinued mailing newsletters in the US and abroad due to high copying and postage costs. That is why we now offer all of our past and present newsletters online.Read more