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Batten Disease is the most common form of a group of disorders called Neuronal Ceroid Lipofuscinoses (or NCLs). Although Batten Disease is usually regarded as the juvenile form of NCL, it has now become the term to encompass all forms of NCL. The forms of NCL are classified by age of onset have the same basic cause, progression and outcome but are all genetically different.
worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten Disease/ NCL become blind, bedridden, and unable to communicate and presently is always fatal. Batten Disease is not contagious or, at this time, preventable. Specifically, Neuronal Ceroid Lipofuscinoses is the general name for a family of at least eight genetically separate neurodegenerative disorders that result from excessive accumlation of lipopigments (lipofuscin) in the body's tissues. These lipopigments are made up of fats and proteins. Their name comes from the technical word lipo, which is short for "lipid" or fat, and from the term pigment, used because they take on a greenish-yellow color when viewed under an ultraviolet light microscope. The lipopigments build up in cells of the brain and the eye as well as in skin, muscle, and many other parts. |
| 8306 Lynnewood Glen Dr. Charlotte, NC 28269 Phone: 704-248-8761 info@garrettswings.org |
| Garrett's Wings provides comfort and non-medical care for terminally-ill children and their families while supporting and promoting research to cure Infantile NCL. We are a 501(c)3 non-profit corporation, enabling contributions of money, goods or services to be tax deductible for the contributor (please consult a tax specialist for advice on your particular situation.) The organization has no paid employees, so 100% of the contributions support the mission and efforts of Garrett's Wings. |
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