July 6-7, 2018
2018 Conference Sponsors ~ Our premier Sponsor/Host was Mayo Medical Labs as well as many other valuable Sponsors.
Conference meetings were at the Embassy Suites by
FOD Conference Info and Speaker Presentations
For all who were not able to attend our Conference July 6-7, 2018 at the Embassy Suites Minneapolis Airport, we have posted the PowerPoint slides from our Speaker presentations, as well our Sponsors, Agenda and brief professional biographies.
The turnout for our 2018 Conference was phenomenal ~ we had over 350, our highest ever for the FOD Group and OAA!
Our Speakers shared their expertise and knowledge of FODs and related medical, psychological, nutritional, family, educational, and newborn screening issues. Families came away from the Conference with ALOT to think about, as well as the opportunity to connect with other Families around the world dealing with many similar issues. They also had many opportunities to speak with our Professionals one-on-one and ask them a variety of questions.
- 2018 Conference Speaker Agenda, Bios and Sponsors
- 2018 FOD Conference Pictures (please upload more!) and OAA Pictures
- 2018 Conference Ending Ceremony Video
Our FOD/OAA International Metabolic Conference is for parents, family members, affected individuals, professionals and exhibitors that have an interest in Metabolic Disorders.
It is only through generous donations and sponsorships that the FOD Group and OAA are able to offer such an important opportunity every two years to Families and Professionalseager to learn more about our disorders.
If you are interested in helping our efforts as a donor or a FUTURE Conference Sponsor please refer to each Group’s website linked above or contact Kathy Stagni directly at firstname.lastname@example.org or call 763.559.1797!
Fatty Oxidation Disorders and Organic Acidemias are a group of rare metabolic disorders whereby fatty acids and protein, respectively, cannot be broken down in the body to be used as energy, especially in times of fasting or illness, and are treated through dietary changes and medications. When undiagnosed, severe medical complications and/or death can occur.
The importance of our Family Conference is to allow our members to meet other parents and professionals and learn more about their own or their child’s rare metabolic disorder. The focus for this conference is for Families to learn more about the medical management, nutrition and the social needs of caring for yourself or a child with a chronic disorder, specifically those with rare metabolic disorders. On Friday, we will have two separate sessions from 8-5pm – one for the FOD Group and one for the OAA Group and there will be a Friday Night Reception from 6-9pm for Families and Speakers. Saturday we will have a joint FOD/OAA session from 8-2pm, Group pictures taken with our FOD and OAA Tshirts, and a Professional Panel Question & Answer time. We will end with a beautiful Ending Ceremony Video!
The conference is a wonderful opportunity for Families to meet each other and have the opportunity to speak with professionals on an informal level. Children are encouraged to attend the Friday night Reception and we offer a variety of snacks and drinks during the Reception.
Our 2018 FOD Speakers
Speaker: Piero Rinaldo, MD, PhD
Presentation: Keynote Address ~ What have I been doing since 2002? Milestones of a personal journey and memorable encounters along the metabolic path.
Speaker: Christopher Boys, PhD, LP
Presentation to FOD Families: The psychology of metabolic conditions: The key to managing stress of FOD on parents and families
Presentation to FOD & OAA Families: Neuropsychology and Metabolic Conditions: The neurocognitive profile of FOD/OAA and the benefits of neuropsychological assessment
Speaker: Susan Berry, MD
University of Minnesota
Presentation to FOD Families: Jumping into your gene pool: Understanding genetic test results
Presentation to FOD & OAA Families: What are the Limits of Newborn Screening?
Speaker: Jerry Vockley, MD, PhD
Children’s Hospital of Pittsburgh
Presentation: New Therapies for Fatty acid Oxidation Disorders
Speaker: D. Holmes Morton, MD
Central Pennsylvania Clinic
and Charles Hehmeyer, Attorney
Raynes Lawn Hehmeyer
Presentation: Emergency Protocols and Q&A session
Speaker: Stephen Kahler, MD
Arkansas Children’s Hospital
Presentation: Use of Carnitine/Variability of FOD Presentations
Speaker: Melanie Gillingham, PhD, RD
Oregon Health & Science University
Presentation: Nutrition Guideline Development Process: VLCAD
Speaker: Jennifer Cleary/Lena Eskin (NIH Caregiving Study)
Presentation: The Caregiving Study at the National Institutes of Health: Exploring the relationship between stress, coping, and social support in families caring for children diagnosed with inherited metabolic conditions
Speaker: Mark Korson, MD
VMP Genetics, LLC
Presentation: I teach. You teach better
If you are interested in helping us plan 2-3 Regional Meet-Ups per year (instead of a Conference every 2 yrs) please contact Deb ~ we can only have the meetings IF we get some help from our members!