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| In This Issue |
November 2009 |
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Genetic
Couselor Student's Research The Experience of Uncertainty Study Parenting Special Needs Magazine
Social Networking
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Genetic Counselor Student's Research It is always exciting to see individuals in the medical community take interest in the situations of those without a diagnosis. Alicia, a graduate student at the University of South Carolina School of Medicine, is giving some extra attention to the level of stress that parents may experience when having a child without a diagnosis. Through a series of questions on a survey she will compare the levels of stress experienced by parents of child with special needs with known and unknown causes. Alicia is asking for your participation in this research project, if you have a child between the ages of 3 to 10. The survey will take approximately 20 minutes. You will have an option of entering into a drawing for a $50 gift card for your participation. For more information about this opportunity visit the survey introduction page, here. The Experience of Uncertainty Study The National Human Genome Research Institute at the National Institutes of Health (NIH) is sponsoring a study that seeks to learn more about how parents of children with an undiagnosed medical condition think and feel about their child's condition. We hope that this knowledge will improve the health care and counseling for these parents. Men and women who are 18 years or older and have at least one child with a medical condition that has remained undiagnosed for more than 2 years are needed to take part in this study. Participation involves one survey that takes about 45 minutes to finish. The survey can be taken online or a paper copy can be mailed to you. For additional information about this study, you may review the Notice to Participants disclosure. When you visit
the Study Notice, you will see a link to the actual survey and the
password to enter the survey. Parenting Special Needs Online Magazine This is a free online publication centered around parenting a special needs child. It has lots of great articles and resources, you can sign up to to receive an e-mail as the newest issue are released. During this holiday season as you are shopping for the perfect give for your friends and family, you can also see how your shopping can benefit a great cause. Your shopping can generate some funds for a non profit organization without paying anything extra. With the Goodsearch toolbar, each time you enter a retailer's website the toolbar will remind you just how much money will go to the organization based on your purchase. Find more information about the Goodsearch toolbar here.
This is a story about 19 year old Jessie a quote from the story "The mind — Jessie's funny, intelligent, almost perky mind — is still there. But it's trapped in a body ravaged by a mystery." read more This is a article about new advances in medical technology and finding new syndromes a quote from the article "recent technological advances in the area of genomics are advancing the discovery of previously unknown syndromes." read more An Australian family deals with the mystery of their child not eating. A quote from the story "The 17-month-old Ruby is suffering from an undiagnosed gastric disorder, which in spite of repeated invasive testing, remains a mystery." read more A 2 year old that has stumped some of the top doctors. A quote from the article "Little James Fewster-Smith's smile hides the heartache of his battle against an unknown illness." read more A quote from the article "Instead of sequencing ten or a hundred or a thousand genes to try to find a mutation, we are now capable of sequencing all of the genes and making clinical sense of the resulting data" read more You may be receiving this
Newsletter through different avenues, so don't forget to
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don't want you to miss anything. Syndromes
Without A Name USA |
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