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Reported by I. Kharytonova, UABDP Liaison
Reviewed by S. Lapchenko, UABDP Information Officer
This meeting took place on September 29, 1999 in Kiev (Ukraine) under encouragement of the Ukrainian-American Birth Defects Program. Among the participants were parents of children with PKU from 25 regions of Ukraine, the Volyn and Rivne Birth Defects Program team, prof. W. Wertelecki (Director of the Ukrainian-American Birth Defects Program), prof I. Barylyak (Scientific Director of the Ukrainian-American Birth Defects Program), H. Vashchylin (Director of the Ukrainian-American Health Center), I. Kharytonova (Ukrainian-American Birth Defects Program Liaison). One of the Program's main goals is support of the Ukrainian Alliance for the Prevention of Birth Defects. Prof. W. Wertelecki said that creation of this Ukrainian social organization helping families with PKU children should be the first real step in building up the Ukrainian Alliance. The Alliance will do all the coordination work connected with the organization's creation and will help to link it with similar international organizations. In its turn the Ukrainian-American Birth Defects Program will help with informational resources.
Prof. W. Wertelecki, MD (left), I.Kharytonova, MD (center), prof. I. Barylyak, MD (right) |
All present at the meeting of parents agreed that only union of all families with PKU children into an all-Ukrainian organization can solve their common problems. Each couple will endeavor to create a local organization in his/her region. A working team was created with the aim of carrying out of all the preparatory work (L. Krechek - Kyivska, Cherkasska, Lvivska regions, (she is also the coordinator in West Ukraine); V. Linevych - Chernigivska region; V. Sushkov, L. Poshyvai - Mykolayivska, Khersonska regions; I. Markova - Donetska, Luhanska regions; Y. Farnosov - Sumska, Kharkivska regions). I. Kharitonova will do the general coordination work and render advisory help.
The meeting decided to create "PKU - managing - diet" fact sheet containing feeding calculations, methods of composing menu and cooking for children with PKU (N. Aphanasyeva - fact sheets creating; L. Poshyvai, O. Pomazan, L. Krechek - cooking recipes book creating; L. Yevtushok, S. Polishchuk, N. Yuskiv - reviewing of all materials; S. Lapchenko - fact sheets and books publishing).
Parents of children with PKU during the meeting |
Participants of the meeting are discussing urgent problems during the break |
The "Bread" group will search for possibilities of producing special bread at Kyivski (O. Klindukhova) and Khmelnitski (M. Babyk) bakeries, other diet products at Ukrainian starch factories (prof. I. Barylyak).
Information group will disseminate information and communicate with all local organizations with the help of email and fax (L. Krechek, V. Sushkov, Y. Farnosov, I. Markova).
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21/January/2002 dc
