Association of Birth Defect Children Inc.

Dr.  C. Everett Koop
Surgeon-General
Rm. 716 G
Humphrey Bldg.
200 Independence Ave, SW
Washington, DC   20201

December 20, 1982

Dear Dr. Koop,

In November of last year, I had the pleasure of meeting with you, Ralph
Hill and Susan McFalls to discuss our concerns about Bendectin.  At that
time, I also told you about our parents group which represented hundreds of
families whose children's birth defects were associated with Bendectin use
during pregnancy.

Our organization has recently changed our name to the Association of Birth
Defect Children, Inc.  Our new group is a nonprofit organization established
to provide information and support to families of children with birth de-
fects believed to be caused by the mother's exposure to drugs, chemicals,
radiation and other environmental agents.  ABDC disseminates information
through a quarterly newsletter and inquiry response service geared primarily
to parents, educators and professionals in the medical and health related
fields.

Our newsletter currently goes out to over 700 members in the United States
and Canada, a comparable group of 450 members in England, a group of 175
in Australia, a group of 500 in Japan and families in Italy, Ireland,
Germany &Switzerland.  We have' received requests for our materials from
families of children with birth defects, nurses, doctors, midwives, child-
birth educators, schools, hospitals and consumer groups.  We have recently
started getting requests from a number of public libraries.

The Association of Bendectin Children began nearly 3 years ago.   We have
existed entirely on donations from our members.   Some months we didn't
know whether we could continue or not, because many parents in our group
cannot contribute anything since they are already overwhelmed by the costs
of medical care for their children.

Now that we have been approved for nonprofit status, we are hoping to
be able to find some outside help with funding.  I have already looked
through the Catalog of Federal Domestic Assistance and spent hours phoning
programs that might fund organizations like ours.  However, as you know,

3201 E. Crystal Lake Avenue/Orlando, Florida 32806/(305) 898-5342


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budget cuts have drastically limited the federal funds available for any
projects like ours.  After the first of the year, we will begin to look at
the availability of funds from private foundations.

Many families in our group have now had more children.  Since their expe-
rience with Bendectin, they have been extremely cautious in subsequent
pregnancies and all the babies have been born beautifully normal.   We feel
that if our group can prevent the birth of a single defective baby, we
have performed a valuable service to our country and its families.   We also
provide the only support service that offers information to parents of
children with all kinds of birth defects.  We have recently been listed as
a service to the handicapped in the Department of Education's "Directory
of National Information Sources on Handicapping Condtitions and Related
Services".

I know that our group is needed and wanted by families of children with
birth defects.  ( I have stacks of letters supporting our efforts). I
know that we can provide an important service.  Bit,  we need the basic
seed money to get started.  It will be difficult for our group to grow if
we have to wait and hope we will get enough donations to send out the next
newsletter.

If you are aware of any federal programs that might offer some assistance
with funding for ou.r work,  could you direct us to the appropriate program
on department.

Thank you for your considcraticn of this letter and our request.

Sincerel;l,