Novi, MI ~ June 25, 2004
For all of those who were unable to attend our conference this past June, we are posting the PowerPoint slides (Please note: some of the slide presentations are large files and may take several minutes to open) from our Speaker presentations, as well as brief professional biographies.
Our turnout again this year was great (@ 45) and we hope that our next conference in approximately 18 months will have an even larger attendance! We will let you know when we have more details of where and when that conference will be. Your suggestions for location, speakers, and topics are always appreciated (email to deb@fodsupport.org).
I want to personally THANK medical doctors Whiteman, Korson and Asamoah, and Lynne Wolfe, Elaina Jurecki, and Barb Marriage for sharing their expertise and knowledge of FODs and related family issues. Families came away from this conference with ALOT to think about, as well as having the opportunity to connect with other families dealing with many similar issues.
We also had the opportunity to meet with several MI families (of several disorders) to help discuss and plan their efforts for expanding their state's newborn screening and formula legislation. It's definitely a challenge (for any state) to take on such efforts to make changes that will benefit ALL Families! Across the country we are making progress, albeit slowly—no matter how difficult it is, NEVER GIVE UP that fight for awareness, education, expanded screening, followup treatment and FAMILY SUPPORT!
Our National Metabolic Conference Speakers
Dr. David Whiteman from the Mayo Clinic in Rochester, MN spoke on "Untangling the Spirals of Metabolic Disease: Primary Diagnoses and Secondary Effects: Implications for Treatment"; Dr. Mark Korson from the Floating Hospital for Children at Tufts-New England Medical Center in Boston addressed "Adult Manifestations of Fatty Acid Oxidation Disorders" focusing on MCAD, VLCAD and LCHAD deficiency; Dr. Alexander Asamoah from Henry Ford Hospital in Detroit spoke on "Gastrointestinal problems in children with metabolic disorders" focusing on GE reflux, vomiting, anorexia, etc.; Lynne Wolfe, Metabolic Nurse Practitioner at Children's Hospital of Pittsburgh discussed "Metabolic Co-factors: Vitamins, Minerals and other Supplements"; and Elaina Jurecki, MS, RD, Kaiser Permanente Medical Center, Northern California spoke about "Providing the Right Fuels for FODs." We also had a professional panel (with many of our speakers, as well as Dr. Barbara Marriage from Abbott Labs) at the end of Friday's session—it was a great time for Families to informally ask questions to our speakers.
The National Coalition for PKU & Allied Disorders and all of the Family Support Groups that attended this Metabolic Conference would like to extend a very sincere appreciation to all of our honored speakers.
Our Families benefited greatly from having them share their expertise and experiences in the various fields related to metabolic disorders. Thank you!
Alexander Asamoah, MD, PhD
Dr. Asamoah obtained his medical degree at the University of Ghana Medical School in Accra, Ghana in 1981 and did further training at Louisiana State University Medical Center in Biometry and Genetics, Columbia-Presbyterian Harlem Hospital Center as a Pediatric Intern and Resident, and at the Harvard Medical School – Children’s Hospital, Boston, as a Clinical Genetics Fellow.
Dr Asamoah is presently a full-time clinical geneticist. He participates in syndrome delineation, neurogenetics evaluation, evaluation and management of children with inborn errors of metabolism, prenatal genetics counseling, and counseling of adult onset diseases. He is a medical consultant to the DNA diagnostics laboratory reports. He participates in residency and clinical genetics fellowship teaching and preceptorship and gives lectures on common genetic syndromes, inborn errors of metabolism, etc to residents and staff physicians, as well as participates in genetics outreach clinics.
He currently holds Academic and Medical Staff Appointments at Henry Ford Hospital, Detroit, Wayne State University School of Medicine, Detroit, and St. Joseph-Mercy Oakland Hospital, Pontiac MI. He has several publications in the American Journal of Medical Genetics, Clinical Genetics, and Pediatric in Review.
Elaina Jurecki, MS, RD
I received my Bachelor’s Degree in Biochemistry at the University of Pennsylvania, and my Master’s Degree in Nutritional Science from Michigan State University. I completed a 1-year dietetic internship at the University of California San Francisco Medical Center, and continued on working there for five years in the Genetics Department, coordinating care for children with Inborn Errors of Metabolism. I also worked in the hospital on the pediatric ward and in the pediatric intensive care unit.
I then was recruited to come work for Kaiser as a Metabolic Nutrition Coordinator for the Northern California Kaisers. I took a three-year break, moving to Southern California, where I worked at Long Beach Memorial Hospital providing nutritional care for pediatric patients in the clinics for genetics, inborn errors, endocrine, and GI. This provided me a good opportunity to see how Medical Centers, outside of Kaiser, manages pediatric patients with chronic disease.
I returned to Northern California Kaiser in fall, 2001, and resumed my position as a Regional Metabolic Nutrition Coordinator in the Genetics Department. I am very interested in pediatric nutrition and in biochemistry, and in the clinical research pertaining to these areas. In addition to my career here at Kaiser, I have a family, and spend a great deal of time volunteering at school and with youth sporting events and activities. My passions include spending time with my family, biking, roller-blading, and hiking, gardening, and reading (usually journal articles).
Mark Korson, MD
Dr. Korson obtained his medical school degree at the University of Toronto in 1982. He completed a pediatric residency at The Hospital for Sick Children in Toronto, followed by a fellowship in genetics and metabolism at Children's Hospital in Boston. He was director of the Metabolism Clinic at Children's Hospital from 1990-2000. Currently, he is Associate Chief of Metabolism at Tufts-New England Medical Center, and Associate Professor of Pediatrics at Tufts University School of Medicine.
Dr. Korson's clinical interests include exploration of the clinical, biochemical and molecular aspects of the inborn errors of metabolism, creating mechanisms in the community for health care maintenance for these patients (especially long distance care), and developing teaching methods for training physicians, residents and medical students about genetic metabolic diseases.
David Whiteman, MD
Dr. Whiteman obtained his undergraduate and medical degrees from Oxford University in the United Kingdom. Following general postgraduate medical training there, during which he realized that he would never be successful as a surgeon (his second career choice: he had already been rejected by the RAF for pilot training because he is so nearsighted), he came to the United States for a year "on a lark."
His first position was as a resident in Pediatrics at Hartford Hospital in Connecticut. He enjoyed Pediatrics, completed his residency, and stayed in the US, both for the sake of further training in Genetics and Metabolism, and also for the sake of a young lady from Rhode Island who is now his wife. His training in Genetics and Metabolism was at the Children's Hospital of Philadelphia in the early 1980s, at the time that Fat Oxidation Defects and Carnitine Deficiency were first being defined there: his longstanding interest in the therapeutic merits of Carnitine dates from that time. Subsequently, he has held a variety of positions in clinical and laboratory genetics and metabolism in medical schools throughout the United States. For the past 4 years he has been focused on the diagnosis, and especially on the treatment, of metabolic disorders [and in particular on mitochondrial disorders], in the Department of Medical Genetics at the Mayo Clinic in Rochester, Minnesota.
He is the father of twin boys, neither of whom wishes to pursue a career in medicine, and has the longest commute (1768 miles) of anyone who either works at the Mayo Clinic or who lives in Cape Elizabeth, Maine. When not practicing medicine, he sings baritone, plays the flute, takes out his frustrations on innocent tennis balls, and enjoys biking, hiking and camping with his family.
Lynne A. Wolfe, MS, CRNP, PNP, BC
Lynne has been a nurse for over 20 years and a Metabolic Nurse Practitioner for nearly 10 years. As a staff nurse, she worked mostly in Pediatric Critical Care. Her Nurse Practitioner training was completed at the University of Rochester in New York where she earned her pediatric primary care degree and also her acute care degree.
She has worked in rural New England, with Dr. Charles Roe in Dallas, and is now working with Dr. Gerard Vockley in Medical Genetics at the Children's Hospital of Pittsburgh. Lynne is very supportive of the FOD and OAA Groups and is an active contributor on both Listserves and their Newsletters.
Once again ~ a big THANK YOU to all that helped make this Conference possible!
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