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SOME COPING TIPS
Finding sunscreens during the winter. A member informed us that drugstore.com carries sunscreens year-'round. Some people have had problems finding sunscreens in the winter. Their e-mail address is http://www.drugstore.com. They also have a phone number: 1-800 378-4786. They are open 24 hours a day.
UV protective suits. Some extremely sensitive people may need these. They were originally designed by NASA for people with a condition other than EPP, but EPP people and people with other kinds of photosensitivity have found them useful. If you want to check it out for yourself, the NASA web address for these suits is: http://technology.jsc.nasa.gov/suitsmain. htm.
EPPREF "SWAP SERVICE" AND PEN-PALS
Laurie Alouf, an EPP Mom, writes that she has two Solumbra size 8 shirts that she would be happy to give to another EPP kid. Contact her at 8700 Boones Chapel Road, Boones Mill, WVA 24065. (First come, first served!)
EPP Mom Holly Anderson' son Ryan would like to contact EPP kids in Michigan. Their phone number is 248-625-5197.
AUTHOR! AUTHOR!
Now grown up EPP Kid, and now a Mom herself, Lori Borgman has written a book called "I Was A Better Mother Before I Had Kids". The ISBN number is 067-102-7220 (this number helps in ordering the book, which can be ordered from any bookstore).
A THANK YOU NOTE
You all were very generous in your response to our "fund-raising drive" of last year, for which we are very grateful. I am happy to tell you that the preliminary experiments which I described to you in EPPREF NEWS issue #26, and which your contributions went on to support, worked so well that our study was published in the July issue of "Nature Medicine", a pretty prestigious journal (page 768), AND we also received a research grant from the National Institutes of Health to continue investigating gene therapy for EPP!! So - a big THANK YOU!!
And - the usual reminder - keep us informed of your address if you want to keep receiving EPPREF NEWS!
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