Jordan, Ashley- Session 1 Project Annotated Bibliography

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    Running head: ANNOTATED BIBLIOGRAPHY 1

    Annotated Bibliography

    Ashley Jordan

    Ivy Tech Community College

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    ANNOTATED BIBLIOGRAPHY 2

    Name of Website: Genetics Home Reference

    URL:http://ghr.nlm.nih.gov/condition/triple-x-syndrome

    Overview: One may find information on what Triple X syndrome is and how common this

    syndrome occurs in the United States. Genetic changes and how the syndrome is inherited are

    also included on this site. Other sources are listed that people can look at if they wish to find out

    more information about Triple X syndrome.

    Evaluation: This site is just a general database for Triple X syndrome it is not a specific

    organization of the syndrome. It does however, have some useful information about the

    syndrome and provides many links to other resources. I found that the fact about how common

    the syndrome occurs in the U.S. to be interesting.

    Name of Website: The National Organization for Albinism and Hypopigmentation

    URL:http://www.albinism.org/publications/what_is_albinism.html

    Overview: An overview, of what exactly albinism is, problems of the disease, and different types

    of the disease are listed. A scholarship and news about the disorder may be found while

    navigating this website. An on-line community for people with this disease can also be seen

    when visiting this site. There are several related links that are listed for people that wish to visit

    them and learn more about albinism.

    Evaluation: Kids may not want to visit this site without the help of a parent. Several publications

    can be read concerning the disorder, so please read them! I found it very thoughtful that the

    creators of this website included related links to other websites that had information about

    albinism.

    http://ghr.nlm.nih.gov/condition/triple-x-syndromehttp://ghr.nlm.nih.gov/condition/triple-x-syndromehttp://ghr.nlm.nih.gov/condition/triple-x-syndromehttp://www.albinism.org/publications/what_is_albinism.htmlhttp://www.albinism.org/publications/what_is_albinism.htmlhttp://www.albinism.org/publications/what_is_albinism.htmlhttp://www.albinism.org/publications/what_is_albinism.htmlhttp://ghr.nlm.nih.gov/condition/triple-x-syndrome
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    ANNOTATED BIBLIOGRAPHY 3

    Name of Website: Huntington's Disease Society of America

    URL:http://www.hdsa.org/

    Overview: Hdsa.org offers information about what Huntingtons Disease is. One may find

    research webinars that may be viewed. A section for news and announcements about HD can be

    found on this site. One can also find national sweepstakes information concerning the disease.

    Various ways to help people with HD are included on the website.

    Evaluation: This website is directed towards adults more but a child may be interested in the

    webinars. Adults should check out the webinars about this disease because they are insightful. I

    found that this site has a national sweepstakes concerning Huntingtons to be very original.

    Name of Website: The William E. Proudford Sickle Cell Fund

    URL:http://www.wepsicklecell.org/about/

    Overview: This website states the causes and what sickle cell anemia really is. It supports

    various ways that people can get involved to help with the disease. One may find videos and

    other resources that describe the disease further. The corporation also list events that someone

    may want to attend to learn more about sickle cell. A program was created that tries to help unite

    kids and families associated with the disease.

    Evaluation: Wesicklecell.org is a website that offers information or resources for parents as well

    as children. The videos abut sickle cell is something that everyone should take a look at. I found

    the Artspeaks program to be very heartwarming because it is great to have a program that unites

    parents and children connected with the disease together.

    Name of Website: Kids Health

    http://www.hdsa.org/http://www.hdsa.org/http://www.hdsa.org/http://www.wepsicklecell.org/about/http://www.wepsicklecell.org/about/http://www.wepsicklecell.org/about/http://www.wepsicklecell.org/about/http://www.hdsa.org/
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    ANNOTATED BIBLIOGRAPHY 4

    URL:http://kidshealth.org/teen/diseases_conditions/genetic/klinefelter.html

    Overview: Klinefelters Disease is describe on this sitealong with the reason why it is a genetic

    disorder. Signs of this disease are listed, but boys may find out that they are fertile if they read

    about other problems associated with this disease. Information about what doctors can do for

    someone with this disease can be found on this site. Treatment options are listed that may help a

    boy with developing more in the way he should.

    Evaluation: This site is both parent and kid or teenager friendly. The website effectively lists

    other problems that may occur due to this disease. I found that the treatment section of this

    website described how boys with Klinefelters may be able to live and develop more as they

    should.

    Name of Website: U.S. National Library of Medicine

    URL:http://www.nlm.nih.gov/medlineplus/ency/article/001166.htm

    Overview: Shown on this website is the main causes and symptoms of Phenylketonuria (PKU).

    PKU is actually a disease that is easily caught by a blood test and this disease is treatment is

    caught early. The site suggest that the outlook of people with this disease looks good if they

    follow suggested diet. One may find possible complications and prevention of the disease on this

    website.

    Evaluation: This website has fantastic information for parents but is not necessarily directed

    towards kids. I found it important that the outlook and prevention were listed for this disease

    because I did not know there was an upside to this disease before looking at this site.

    Name of Website: Turner Syndrome Society of the United States

    http://kidshealth.org/teen/diseases_conditions/genetic/klinefelter.htmlhttp://kidshealth.org/teen/diseases_conditions/genetic/klinefelter.htmlhttp://kidshealth.org/teen/diseases_conditions/genetic/klinefelter.htmlhttp://www.nlm.nih.gov/medlineplus/ency/article/001166.htmhttp://www.nlm.nih.gov/medlineplus/ency/article/001166.htmhttp://www.nlm.nih.gov/medlineplus/ency/article/001166.htmhttp://www.nlm.nih.gov/medlineplus/ency/article/001166.htmhttp://kidshealth.org/teen/diseases_conditions/genetic/klinefelter.html
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    ANNOTATED BIBLIOGRAPHY 5

    URL:http://www.turnersyndrome.org/

    Overview: Turnersyndrome.org an overview of what the syndrome is and some facts about it.

    There is an interesting timeline of the medical advances that have helped people with the

    syndrome. Support groups and scholarship opportunities can be found on this website. Parents

    and women whom may have the disease can find some helpful information. Several

    opportunities are listed for those that wish to take action and help with the efforts of this

    syndrome.

    Evaluation: Turnersyndrome.org establishes a fantastic network of information and sources for

    women with the syndrome. There is national conference information which many may want to

    attend. I found the medical advances timeline to be very unique to this website.

    Name of Website: Cystic Fibrous Foundation

    URL: http://www.cff.org/aboutcf/

    Overview: The Cystic Fibrous Foundation clearly review what the disease is and what the

    foundation is all about. One may find news and events about the disease on this website; among

    videos and employment opportunities. There is a page for scholarships for people that have the

    disease. Cff.org talks about any treatment options or processes that might help people with

    Cystic Fibrous. Surprisingly, there is information about trials and research milestones based on

    this disease. The ways to get involved in this foundation are endless so just take a look.

    Evaluation: Cff.org offers many outstanding programs, scholarships, information, and other

    opportunities concerning the disease. This website is not just for adults or parents, it is also for

    children too. A tab to check out would have to be the scholarships tabs; who knew there were

    scholarships for Cystic Fibrous!

    http://www.turnersyndrome.org/http://www.turnersyndrome.org/http://www.turnersyndrome.org/http://www.turnersyndrome.org/
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    ANNOTATED BIBLIOGRAPHY 6

    Name of Website: Kids Health

    URL:http://kidshealth.org/parent/medical/genetic/tay_sachs.html

    Overview: Kidshealth.org covers various ideas about the Tay - Sachs disease. The disease is

    defined and the website goes on to tell us about who may be at risk to get the disease.

    Apparently, there is a screening that can be done to see if someone is a carrier; there is

    information on how a mother can get a prenatal diagnosis of the disease. Finally, the site

    describes the signs and symptoms of a child that may have Tay- Sachs; it tells parents how to

    help their children if they were to have the disease.

    Evaluation: Kids Health did a fantastic job of covers all aspects of information that someone

    would want to know about Tay-Sachs Disease. This web page however, is geared towards

    parents more than children. I found it intriguing that parents can get screened to see if they are

    carriers of the disease I was unaware of this.

    Name of Website: Down Syndrome International

    URL:http://www.ds-int.org/home

    Overview: This website was designed to connect and give information to people all over the

    world about Down syndrome. People with Down syndrome or the family/friends of people with

    the syndrome can become members of the website; there is also a fundraising tab where people

    can help find ways to raise funds for the cause. Reach Out is a special program that the website

    sponsors that focuses on training and working with people that have the syndrome; these people

    are in developing countries. There is information on a World Down Syndrome Day which I

    http://kidshealth.org/parent/medical/genetic/tay_sachs.htmlhttp://kidshealth.org/parent/medical/genetic/tay_sachs.htmlhttp://kidshealth.org/parent/medical/genetic/tay_sachs.htmlhttp://www.ds-int.org/homehttp://www.ds-int.org/homehttp://www.ds-int.org/homehttp://www.ds-int.org/homehttp://kidshealth.org/parent/medical/genetic/tay_sachs.html
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    ANNOTATED BIBLIOGRAPHY 7

    found interesting. People can also find information on the World Down Syndrome Congress and

    when the next meeting will be.

    Evaluation: This website is very unique it clearly covers various areas of information about

    Down syndrome. The website is more centered towards parents or adults of people that have

    Down syndrome. Ds-int.org is a great organization that provides many people with information

    about Down syndrome and helps people with the disease connect.