|
The National Organization for Albinism and Hypopigmentation (NOAH) is a non-profit organization that assists people who have albinism. NOAH was created in 1982 and is based in East Hampstead, New Hampshire.〔(healthfinder.gov — National Organization for Albinism and Hypopigmentation - NOAH )〕 Through its advocacy efforts, publications and events, NOAH offers information and support to people with albinism, their families and the professionals who work with them. Albinism is a genetic condition that results in individuals having little or no pigment in their eyes, skin, or hair. They have inherited altered genes that do not make the usual amounts of a pigment called melanin. One person in 17,000 in the United States has some type of albinism. Albinism affects people from all races. Most children with albinism are born to parents who have normal hair and eye color for their ethnic backgrounds. A common myth is that people with albinism have red eyes. In fact there are different types of albinism and the amount of pigment in the eyes varies. Although some individuals with albinism have reddish or violet eyes, most have blue eyes. Some have hazel or brown eyes. However, all forms of albinism are associated with uncorrectable vision problems. NOAH, which is a tax-exempt 501(c)(3) organization, is operated by its members on a volunteer basis and is funded primarily by the dues and contributions of its members. NOAH has also received grants from foundations and organizations for specific projects, such as its handbook for new parents. NOAH’s board of directors and many members are involved with specific committees and projects that address a wide variety of issues relevant to the albinism community. Committees include advocacy, NOAH’s biannual conference, financial development, albinism awareness, and editorial. NOAH's objectives are to provide information and support regarding albinism and related conditions, to promote public and professional education about these conditions, to encourage research and funding that will lead to improved diagnosis and management of albinism, and to provide networking for those with special interests related to albinism such as minority groups and Hermansky–Pudlak syndrome (HPS). NOAH provides information and support for its members by sponsoring workshops and conferences on albinism, publishing a quarterly magazine, ''Albinism InSight'', and information bulletins on topics specific to living with albinism, providing a network of local chapters and contact people, providing a Web site that has information about albinism and bulletin boards where people can share experience, spreading knowledge about albinism and working to improve attitudes towards those with the condition through television appearances, newspaper articles, information packets for libraries, and outreach to professionals, and networking with support groups for people with albinism in other countries, and promoting the development of albinism support groups throughout the world through participation in the Albinism World Alliance. == Advocacy == Albinism is an often misunderstood and stigmatized condition. For that reason, NOAH's leadership takes particular interest in advocacy efforts that will improve the understanding and acceptance of albinism around the world. Most recently, the organization has been working with Positive Exposure and the Under the Same Sun Fund to stop the violence against individuals with albinism in parts of Africa, specifically in Tanzania where dozens of children and adults with albinism have been slaughtered by individuals believing that the body parts of a person with albinism will bring them good fortune. Perhaps NOAH's most successful public relations campaign came in 2006 during the release of the movie ''The Da Vinci Code'' for its portrayal of a cliched and offensive evil albino character named Silas. In a report by the Associated Press, NOAH President Mike McGowan was quoted as saying "The ''Da Vinci'' character is just the latest in a long string. The problem is there has been no balance. There are no realistic, sympathetic or heroic characters with albinism that you can find in movies or popular culture.”〔(News: 'Da Vinci Code' premier sparks protests - OCRegister.com )〕 Skinema.com, a Web site run by San Francisco dermatologist Vail Reese, thoroughly documents the portrayal of conditions like albinism in mainstream media. NOAH actively works to counter these negative and often inaccurate depictions of albinism. 抄文引用元・出典: フリー百科事典『 ウィキペディア（Wikipedia）』 ■ウィキペディアで「National Organization for Albinism and Hypopigmentation」の詳細全文を読む スポンサード リンク
|