Premier Issue 1992 Winter

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Dear RRP Families and Patients,

On November 14, 1991 our two year old daughter, Lindsay, was diagnosed with Juvenile Laryngeal Papillomatosis. Since then she has undergone five surgical procedures (using CO2 laser) in order to keep the growth of the papillomas under control. Our desire to learn about the experience of others who are coping with similar situations, has motivated us to initiate this newsletter. We hope this will serve to bring into mutual contact, families who have had their lives affected by this very difficult disease ( i.e., a support network).

There are two main objectives in this first issue. First to compile a list of names, addresses, telephone numbers, electronic mail addresses, etc. This list would be made available only to those names on the list. The second objective is to get an idea of how this disease has progressed and how it is effecting the lives of the patients and families involved. In this regard we have included a questionnaire. If you wish to remain anonymous just omit your names and addresses. All information relating disease specifics and patient names will remain confidential, i.e., any published information based on this questionnaire will not include names. If you have any additional information, questions or comments which you would like to share with others via future newsletters please send it along as well.

We appreciate any degree of participation that you feel comfortable with.

Please send your replies to:

Bill and Marlene Stern
50 Wesleyan Drive
Hamilton Square, NJ. 08690

Home Phone: 609-890-0502

Bill at Work: 609-452-6545
e-mail (internet):
wfs@gfdl.gov

Marlene at Work: 609-258-2751
e-mail (bitnet):
mstern@lindsay.princeton.edu