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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 2004 FOD 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.
Read more about our
speakers.
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