©Nevus Network News

The Congenital Nevus Support Group

PO Box 305 West Salem, OH 44287 (419) 853-4525 (405) 377-3403

web site: http://www.nevusnetwork.org email: info@nevusnetwork.org


Number 5 Se parle francais. Se habla espanol. Sprechen sie deutsch. Summer, 1993

Success of Nevus Network Depends on You

Dermatology Convention Next Nevus Network Milestone 

Join the Nevus Network


Success of N. N. Depends on You!

 Dear Members and Friends,


The Nevus Network keeps growing! And we've been very busy behind the scenes working on our two main goals: 1) to increase our publicity in the medical field so that parents of affected newborns throughout the USA and the globe will be aware of our group soon after birth, preferably within 48 hours; 2) to increase our publicity in the lay press so that we can attract more older people with nevi to serve as role models for our younger members.

The Nevus Network has many long-term plans for the future! We’d like to have a web site. (Note: we obtained a web site in 1996.) We'd like to increase the size of our database so that the statistics we publish on members is as accurate as possible. We need some national publicity to increase our membership. Does anyone want to write to their favorite talk-show host about a television feature on us? Or submit an article about us to a national magazine? Does anyone have any legal expertise to donate? If you have any skills that may be of interest to the group, please contact us.

We'd like to ask each of you to become a regional representative of the Nevus Network. Please contact all of the local dermatologists and pediatricians in your area and distribute copies of our literature to them. Do the same when you are out of town visiting a new area. Most contacts will require a pre-call, a mail-out of our literature, and a post-call to verify receipt. Add your local name and phone number in the appropriate area on our literature before copying it for mail-out. We have found the post-call to be absolutely essential to insure that an organization will list us among their referral resources. We have reprinted updated versions of our literature, so please use the most recent version. Contact your local March of Dimes, Easter Seals, self-help clearinghouse, etc. Please send us the addresses of the Pigmented Lesion Clinics located at the major universities in your area. Also please send the names and addresses of any other patients/doctors you meet who are interested in our group, so we can place them on our mailing list. Other methods of publicity include writing a letter to the editor of your newspaper describing how happy you were to find the Nevus Network. Personal ads in your local city magazine or a national magazine can also help us reach out to newcomers. The possibilities are virtually endless!

In other recent news, we sent 1,000 copies of our information sheet (with Spanish subtitles!) down to the South American annual dermatology meeting via Dr. Kopf. BJ was profiled in a feature article in Medical Economics which resulted in about 10 new members for the Nevus Network. The Midwest regional group held a recent get-together at Kelly P.'s home in Lansing, MI. A big thank-you to Joe F. for volunteering the use of his computer for printing all our literature. And another thank-you to Karla H. for her generous donation to the Nevus Network! Don't forget to send in your permission slip for penpals. We still need articles for the newsletter. Don't worry about grammar! We'll edit it here. If possible send us a photo of your child's nevus, as it helps us to match contacts. Keep your feedback, both positive and negative, coming. We need every member's help! Remember, there are no dues or fees to join our group. Simply sign up for the mailing list! The Editors -- BJ and Kelly

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Dermatology Convention Next Nevus Network Milestone

  WE NEED YOUR HELP!! The Nevus Network has been assigned an exhibit table, at no cost, at the American Academy of Dermatology annual meeting in Washington, DC on Dec. 5-9, 1993. There will be about 6,000 dermatologists at the meeting. We will need 2 members to staff the table each day. We will need at least $800 to copy our literature to hand out liberally to all interested persons. Our annual income from donations averages about $300/year. Our expenses are easily triple that amount primarily from telephone calls, printing, and postage. The shortfall has been coming from Kelly's and my personal funds. As you can see, we desperately need financial help to carry out our biggest project ever! Please help in any way you can. Host a bake sale or other fund-raiser. Ask your friends and relatives for donations, too. Help make our exhibit a big success! (Editor's note:It was!)--BJ, Arlington, VA

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Nevus Network PO Box 305 West Salem, OH 44287

Ph: 419-853-4525 or 405-377-3403

web site: Http://www.nevusnetwork.org e-mail: info@nevusnetwork.org


Please place my name on your mailing list. Please print clearly. Enclose a large, self-addressed manila envelope with extra postage in your request for information.


Name _____________________________________________________________________________________

Address ___________________________________________________________________________________

City ___________________________________State ______________ ZIP _____________________________

Telephone ___________________________ e-mail ________________________________________________

Person’s name __________________________________ Person’s birthday _____________________________


Medical description___________________________________________________________________________



Any new medical changes? _____________________________________________________________________



_____ I give permission for the information above to be listed so that I can find penpals. I understand only members listed will receive penpals. ___________________________________Signature

_____ I wish to make a donation, payable to the Nevus Network, in the amount of $ _________. Stamps are also welcome. Because we are a completely private and independent charity, and we do not have 501(c)3 status,your donations are not tax deductible with the IRS.


_____ I wish to donate negatives and photographs to be used for educational purposes by the Nevus Network, including on our web site. (Before/after, young/old photos are very helpful.)______________________________Signature


_____ I understand that the Nevus Network is a private, independent lay support group and does NOT provide medical advice, medical referrals, or physician referrals. I understand that I am NOT to act on the medical information provided by any member of the support group but to act ONLY on the advice of my personal physician(s). I understand that the medical information provided is of a general nature only and may or may not be applicable to my or my child’s particular medical situation. I understand that I must seek specific medical advice from my own personal doctors. __________________________________________Signature (Required for placement on mailing list)


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The opinions expressed in the Nevus Network News are those of the writers and do not necessarily reflect the views of the Nevus Network. ©1993 Nevus Network. Reprinted 2004.