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

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.

Attendees of the 2014 FOD/OAA conference

Our 2014 FOD Speakers and Joint FOD/OAA Speakers

Brian Kirmse, MD

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

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

Lynne A. Wolfe, MS, CRNP, BC
Genetic Nurse Practitioner
Epi-743 MitoWorks Study
Congenital Disorders of Glycosylation protocol
Undiagnosed Diseases Program
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

Carol L. 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

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

Peter J. 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

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

Melanie Lockhart
Director, State Affairs
March of Dimes
Washington, DC

Presentation: ‘Public Policies and Inborn Errors of Metabolism’

Suzanne Ripley, PhD

Suzanne Ripley, PhD
Accessing Disability Services
Falls Church, VA 

Presentation: ‘Possibilities, Processes, and People: IEPs, 504 Plans and getting what you need’

Chuck Hehmeyer

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!

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