Arlington, VA ~ July 25-26, 2014
2014 Conference Sponsors ~ THANK YOU ~ without your support we would have not been able to offer this fantastic opportunity We had over 250 attendees!!
Conference meetings were at the Crystal Gateway Marriott.
FOD Speaker Presentations
For all of those who were unable to attend our conference on July 25-26 at the Crystal Gate Marriott, we are posting the PowerPoint slides (converted to PDF Handouts for easier viewing) from our Speaker presentations, as well our Sponsors, Agenda and brief professional biographies.
Our turnout this year was our highest ever for the FOD Group (about 140 FOD, 90 OAA, @25 professionals) and we hope that our next conference in 2 years will have an even larger attendance! We will let you know if we are successful at finding a major sponsor to help us offer another great Conference. Your suggestions for location, speakers, and topics are always appreciated (email to deb@fodsupport.org).
I want to personally THANK several individuals that helped Kathy Stagni (OAA) and I coordinate this fantastic event: Firstly, all of our Sponsors (those that gave monetary donations and/or products), and our local Host, Children’s National Medical Center - Section of Genetics and Metabolism and Dr Kim Chapman and many others listed in our Speaker Agenda! Thank you also to ALL of our FOD Volunteers (Eileen Shank, Gwen Abele, Brenda Goodman, Stephanie Harry) and several others, like OAA moms Jana Monaco and Raymonde DeGrace) and the student Volunteers that helped in the Children's Activity Room! THANK you to all of our Speakers for sharing their expertise and knowledge of FODs and related medical, psychological, nutritional, family, educational, and newborn screening issues. Families came away from this conference with ALOT to think about, as well as the opportunity to connect with other Families around the country dealing with many similar issues. They also had many opportunities to speak with our Professionals and ask them a variety of questions.
2014 Conference Ending Ceremony Video [mp4 - very large file so takes awhile to download]
Our 2014 FOD Speakers and Joint FOD/OAA Speakers
Brian Kirmse, MD
Genetics and Metabolism Children’s National Medical Center Washington, DC
Presentation: 'Turning Fat to Water: Energy Metabolism & Fatty Acid Oxidation'
Matthew Rasberry, RD, LD, CNSC
Clinical Metabolic Dietitian – Division of Genetics & Metabolism Children’s National Health System Washington, DC
Presentation: 'Passing the Baton of Medical/Nutritional Management'
Lynne A. Wolfe, MS, CRNP, BC
Genetic Nurse Practitioner Epi-743 MitoWorks Study Congenital Disorders of Glycosylation protocol Undiagnosed Diseases Program NIH/NHGRI – CRC Bethesda, MD
FOD Presentation: 'The Elusive Magic Pill: Supplement Use in FODs' and 'Transitions: Growing Up with Special Health Needs'
Joint Presentation: 'Transitions: Growing up with a Special Health Need'
Carol Greene, MD
University of Maryland School of Medicine, Professor of Pediatrics and of OB/Gyn and Reproductive Sciences, Director of Clinical Genetics, Division of Pediatrics. Co-Director, Adult Genetics and Personalized Medicine Clinic Baltimore, MD
Presentation: With a difference: Exploring variability in management of inborn errors of metabolism'
Carla Messenger, PhD, PLLC
Clinical Psychologist Arlington, VA
Presentation: 'Staying strong: Building resilience among children/teens with chronic illnesses and their families'
Peter McGuire, MS, MD, FAAP
Physician Scientist National Human Genome Research Institute National Institutes of Health Bethesda, MD
Presentation: 'The NIH MINI Study: Metabolism, Infection and Immunity in Inborn Errors of Metabolism'
Andrea Gropman, MD, FAAP, FACMG
Associate Professor of Neurology and Pediatrics Department of Neurology Children’s National Medical Center Washington, DC
Presentation: 'Deciphering the neurology of rare inborn errors of metabolism with a focus on organic acidemias and fatty acid oxidation disorders'
Melanie Lockhart
Director, State Affairs March of Dimes Washington, DC
Presentation: 'Public Policies and Inborn Errors of Metabolism'
Suzanne Ripley, PhD
Accessing Disability Services Falls Church, VA Website
Presentation: 'Possibilities, Processes, and People: IEPs, 504 Plans and getting what you need'
Charles P Hehmeyer, Attorney
Raynes McCarty Philadelphia PA
Presentation: 'The Importance of Emergency Protocols for Patients with Inborn Errors'
Jerry Vockley, MD, PhD
Chief of Medical Genetics Division of Medical Genetics Children’s Hospital of Pittsburgh of UPMC Pittsburgh, PA
Study Recruitment
Hope to see you again in 2016!