[Congressional Record Volume 146, Number 71 (Friday, June 9, 2000)]
[Senate]
[Pages S4928-S4929]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




              CONGRATULATING NOFAS ON 10 YEARS OF PROGRESS

  Mr. DASCHLE. Mr. President, 10 years ago, I met with an extraordinary 
group of people in the basement of a home in suburban Maryland, just 
outside Washington, DC. They came from all kinds of backgrounds and 
fields, but they were united by one common desire, and that was to try 
to prevent fetal alcohol syndrome and help children and families who 
are living with its consequences.
  The other night, I saw some of those same people again at a reception 
celebrating the 10th anniversary of NOFAS, the National Organization 
for Fetal Alcohol Syndrome.
  Born in that suburban Maryland basement 10 years ago, NOFAS is now 
the world's leading clearinghouse for information on fetal alcohol 
syndrome and fetal alcohol effects. I am proud to say that my wife and 
I serve on its board of directors.
  At the reception the other night, I was asked to say a few words 
about why I support NOFAS. I could have cited its pivotal role in the 
significant advances in our understanding of fetal alcohol syndrome and 
fetal alcohol effect. Ten years ago, we knew very little about fetal 
alcohol syndrome or fetal alcohol effects, its only slightly milder 
version. Today, we know that as many as 40,000 children are born each 
year in this country with FAS and other alcohol-related conditions, 
costing Americans more than $3 billion a year in direct health care 
expenses.
  We know that fetal alcohol syndrome is the leading known cause of 
mental retardation among children. We know that FAS and FAE are both 
100 percent preventable when pregnant women abstain from alcohol. And 
we know now that there is no safe level of alcohol use during 
pregnancy. That is progress, and it is possible we still would not know 
these things today were it not for 10 years of diligent and dedicated 
work by the National Organization for Fetal Alcohol Syndrome. Instead, 
I talked about two other reasons that I support NOFAS. Those reasons 
are Karli Schrider and Lucy Klene. If you ever drop by the NOFAS office 
in Washington on a Friday afternoon, there is a good chance you will 
run into Karli. She volunteers at NOFAS every Friday stuffing 
information packets. It is one of her many volunteer jobs.
  Twenty-eight years ago, when Karli's mother, Kathy, was pregnant with 
Karli, it was not uncommon for expectant mothers to be told to ``drink 
a beer a day for a fat, healthy baby.'' Women who were in danger of 
miscarrying were sometimes hospitalized and given alcohol intravenously 
for 5 or 6 hours in the mistaken belief it would prevent miscarriage. 
Back then, it never crossed Kathy's mind that her occasional glasses of 
wine might be harming her unborn child. Besides, just the year before, 
Kathy had had another baby who was perfectly healthy, and she drank 
during that pregnancy, too. The first time Karli was misdiagnosed, she 
was an infant. A doctor attributed her developmental delays to chronic 
ear infections.
  When he was 4 years old, a psychologist offered another explanation 
for Karli's difficulties. He said she was

[[Page S4929]]

being ``willfully disobedient.'' When Karli was 8, a team of 
specialists misdiagnosed her again with cerebral palsy. Eight years 
later, when Karli was 16, Kathy was training to be a substance abuse 
counselor. As part of her training, she attended a conference on crack 
babies. Sitting in the audience, she was stunned. Every characteristic 
of crack babies the lecturer described, Karli had. But Kathy had never 
used crack. She tracked down the few studies that had been done at that 
time on the effects of alcohol on fetuses. Again, she saw the same list 
of symptoms.

  Years later, researchers would announce that most of the symptoms 
they originally thought were the result of fetal exposure to crack were 
actually the result of fetal alcohol exposure, and that alcohol is much 
more devastating to fetuses than crack or any other drug. That was 11 
years ago, before NOFAS was born. Learning the real cause of Karli's 
special challenges has not erased those challenges. FAS and FAE are 
lifelong conditions.
  But knowing the truth has enabled Kathy--and others in Karli's life 
to focus less on Karli's deficits, and more on her strengths. One of 
those strengths is Karli's extraordinary kindness and empathy. In 
addition to her volunteer work at NOFAS, Karli also volunteers to help 
people with cerebral palsy and the elderly. Two years ago, she was 
named one of America's ``Thousand Points of Life'' by former President 
Bush. She is an inspiration to everyone who meets her, and one of the 
reasons I believe so deeply in the work NOFAS does.
  Another reason I believe in NOFAS is because of a pint-sized little 
girl named Lucy Klene. Lucy is 4 years old. She spent the first two 
years of her life in an orphanage in Russia. When she was 2, she was 
adopted by Stephan and Lydia Klene, of Herndon, VA. The Klenes also 
adopted a son from Russia, Paul, who is 3 years old and has no apparent 
fetal alcohol effects. Within a month after bringing Lucy and Paul 
home, Stephan and Lydia began to suspect that Lucy had special 
challenges. Over the next 16 months, Lucy was evaluated eight times by 
pediatricians and other specialists. Not one of them recognized the 
symptoms of Lucy's fetal alcohol effects. Finally, scouring the 
Internet, Stephan stumbled on the truth. He and Lydia took their 
research to Lucy's pediatrician, who read it and confirmed their hunch.
  Today, Lucy is a talented little gymnast who attends special 
education preschool. While it is still too early to know for sure, her 
doctor and parents think there is a good chance she will be able to 
live an independent and productive life when she grows up. Together, 
Karli and Lucy illustrate some of the progress that has been made in 
the 10 years since NOFAS was born. We still have a long way to go. 
Today children with FAS and FAE are being diagnosed earlier. That means 
they are getting help earlier, which means they have a better chance at 
full and productive lives.
  It took Karli's family 16 years to get a correct diagnosis. It took 
Lucy's family 16 months. That is progress. Eleven years ago, when Karli 
was diagnosed, there was very little research on the effects of alcohol 
on fetuses. Ten years later, Lucy's father was able to find an enormous 
amount of information on the Internet. Slowly but surely, the studies 
are being done and the information is reaching the people who need it. 
That is real progress. When Karli was diagnosed, there were few, if 
any, people Kathy could turn to for support and advice. Today, Stephan 
and Lydia attend a NOFAS support group for parents of children with FAS 
and FAE, and they know they are not alone. That, too, is progress.
  At the reception the other night, we celebrated an incredible 
milestone, the 10th anniversary of NOFAS. But next Thursday, June 15, 
will mark another milestone. At the urging of Stephan and Lydia, in 
Fairfax, VA, the school district will hold its first ever meeting to 
help preschool teachers recognize FAS and FAE and help children and 
families living with this challenge each and every day. And NOFAS will 
conduct the training. That is real progress.
  I hope everyone today will recognize how fortunate we are--those of 
us lucky enough to be born healthy, those of us lucky enough to be born 
without fetal alcohol syndrome or fetal alcohol effect.
  I hope everyone will congratulate those who have worked so diligently 
over the course of the last 10 years to make NOFAS what it is today, 
and to recognize NOFAS for the difference they are making in the lives 
of Karli and Lucy and hundreds of thousands of others who live with the 
challenges of FAS and FAE, and for millions of babies who have been 
born healthy these last 10 years because of NOFAS. May their next 10 
years be even more remarkable.
  I yield the floor.
  The PRESIDING OFFICER. The Senator from Kansas.

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