Guest guest Posted January 26, 2000 Report Share Posted January 26, 2000 , Good evening! Several years ago, in an adult CF pamphlet/newsletter that Barbara Palys was involved with (forgot the name), there was a FABULOUS article about an African American family that experienced CF. I believe all the siblings had CF ... 4-5 of them ... and only the daughter was now living. It's a really interesting and educational CF story. Barbara, if you're out there (or anyone else that can help), please chime in .... since I moved in July from TN to VA, my CF Awareness box that I used to take with me on volunteer speeches, is packed away somewhere. Maybe can get a copy of the article from you. Keep up the great work, ... raising CF awareness will help other families out there get diagnosed early! and family Mom of Henry, 6-year-old with CF ... who loves to play ice hockey with his older brothers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 It was the IACFA newsletter . Now with a new name. Barb doesn't do it anymore. She is retired & taking care of her health ..........I the new name is CYSTIC FIBROSIS WORLDWIDE-Go to their web site & ask for a back issue or the archives with that article. www.cfww.org The editor can be reached at editor@... There have been some changes due to illness & passing , so I cant tell you at this time who will response , BUT am sure someone will get back to you. (I got the info from their recent newsletter.) lOVE & HUGS, GrandmoMBEV Re: " whites only " disease , Good evening! Several years ago, in an adult CF pamphlet/newsletter that Barbara Palys was involved with (forgot the name), there was a FABULOUS article about an African American family that experienced CF. I believe all the siblings had CF ... 4-5 of them ... and only the daughter was now living. It's a really interesting and educational CF story. Barbara, if you're out there (or anyone else that can help), please chime in ... since I moved in July from TN to VA, my CF Awareness box that I used to take with me on volunteer speeches, is packed away somewhere. Maybe can get a copy of the article from you. Keep up the great work, ... raising CF awareness will help other families out there get diagnosed early! and family Mom of Henry, 6-year-old with CF ... who loves to play ice hockey with his older brothers ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
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