National Organization for Albinism and Hypopigmentation

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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.[1]

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[edit]

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.”[2] 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.

Conferences and national events[edit]

Every two years, NOAH hosts its largest and most dynamic event, the NOAH National Conference. Held in different regions of the country, NOAH national conferences provide the albinism community with unparalleled opportunities to connect with one another, to share experiences, to learn about current research and to celebrate the diversity of the community. NOAH conferences traditionally draw attendees from all over the world and offer special programming for children, teens, young adults and new parents. Session topics address issues over a variety of issues relating to albinism, including genetic research, vision testing, educational concerns, employment, makeup, social issues and technology. Because the condition of albinism is rare and many people with albinism are the only ones in their families or communities, NOAH conferences are unique in that they offer people with albinism of all ages the chance to meet others like them and to share common experiences.

Several active local chapters and special interest groups also host mini-conferences throughout the year. In 2009, mini-conferences have been scheduled for Chicago, New York, West Virginia, north Texas, Kansas City and Los Angeles.

On off years between conferences, NOAH's leadership hosts a social weekend for adults with albinism called Adult Day. This event, which is held in a different location every two years, draws adults with albinism from across the country and offers educational programming, social events and community service projects to keep the albinism community connected. In 2007, Adult Day was held in New Orleans, Louisiana, where attendees not only had an opportunity to take in the sights, sounds and culinary delicacies of New Orleans, but also participated in a service project with Beacon of Hope in order to help neighborhoods rebuild and recover from Hurricane Katrina.

In 2005, NOAH held its first Family Summer Camp at Beacon Lodge in Mount Union, Pennsylvania. This was the first and only summer camp experience designed specifically to meet the needs of children with albinism. The camp, which has now become a biannual fixture in NOAH's national events, offers structured activities, educational sessions and social events for young children and families taking into account the unique visual and sun care needs of children with the condition.

In 2008, NOAH established its first-ever scholarship award for college students with albinism. The Michael J. McGowan Leadership Scholarship Award, named after the organization's current president, recognizes leadership and empowers young people with albinism. NOAH will award one scholarship annually to a student with albinism enrolled in an undergraduate program at an institution of higher education. This award aims to enhance educational opportunities for students with albinism while celebrating outstanding leadership qualities similar to those exhibited by NOAH's dedicated current and past leaders.

Support services for parents of newly diagnosed children[edit]

NOAH provides special support to parents with newly diagnosed children. Receiving a diagnosis of albinism can be shocking and frightening to many families, which is why NOAH has made great efforts to reach out to new families and make accurate information readily available to them and the medical professionals who work with them. NOAH's Rapid Responder Program connects new parents with other parents of children with albinism to share concerns and reassurance. Rapid Responders, who are specially trained, have strong knowledge of the medical, social and biological aspects of albinism and attend semiannual teleconference training sessions to sharpen skills and knowledge. For many new families, a conversation with a Rapid Responder is their first opportunity to receive honest, accurate information about albinism and to connect with someone in the albinism community who is willing to listen and offer support.

In 2008, NOAH announced the release of its first full-length book, titled Raising a Child with Albinism: A Guide to the Early Years. The book is a comprehensive resource guide for a family with a young child with albinism. Everything from the types of specialists you may encounter, early intervention services, self-esteem and sports are covered in detail. It’s full of practical advice and caring insights from experienced parents and adults with albinism. While the focus is on children from birth through first grade, there is a great deal of information and advice for parents of older children, too. Children and teens with albinism can also benefit from having a book full of pictures of children like themselves to look at and share with others.

Fundraising[edit]

In addition to year-round fundraising efforts, NOAH members across North America participate in annual bowl-a-thons to raise money for the organization. In 2009, NOAH's bowl-a-thon efforts collectively raised over $60,000 that will help the organization to grow and expand its services to individuals and families. in addition to providing wonderful opportunities for fellowship amongst the albinism community, volunteers play an active part in supporting the organization through grassroots organizing.

Partnerships[edit]

NOAH maintains collaborative relationships with a number of organizations that also support the albinism community. The HPS Network, which promotes research, fellowship and advocacy for individuals with a specific type of albinism known as Hermansky-Pudlak Syndrome, has been a long-standing sister organization to NOAH. In 1998, NOAH established a relationship with Rick Guidotti, founder and director of Positive Exposure, a New York-based initiative that celebrates genetic diversity through photography and international advocacy efforts.

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