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Myotonic Dystrophy Foundation
The Myotonic Dystrophy Foundation (MDF) is a patient organization focused solely on myotonic dystrophy (DM). Based in the Preservation Park of Oakland, California, MDF was founded by families living with myotonic dystrophy. It is an American 501(c)(3) non-profit organization. History MDF evolved during the International Myotonic Dystrophy Consortium (IDMC-5) in October 2005 to create a national advocacy organization for people living with myotonic dystrophy. In September 2019, the organization rebranded to ''Myotonic'' with the hope of garnering more attention for the rare disease A rare disease is any disease that affects a small percentage of the population. In some parts of the world, an orphan disease is a rare disease whose rarity means there is a lack of a market large enough to gain support and resources for discove .... However, in 2021, the organization reverted its name back to the Myotonic Dystrophy Foundation citing a strong community preference for the origina ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Non-profit
A nonprofit organization (NPO) or non-profit organisation, also known as a non-business entity, not-for-profit organization, or nonprofit institution, is a legal entity organized and operated for a collective, public or social benefit, in contrast with an entity that operates as a business aiming to generate a profit for its owners. A nonprofit is subject to the non-distribution constraint: any revenues that exceed expenses must be committed to the organization's purpose, not taken by private parties. An array of organizations are nonprofit, including some political organizations, schools, business associations, churches, social clubs, and consumer cooperatives. Nonprofit entities may seek approval from governments to be tax-exempt, and some may also qualify to receive tax-deductible contributions, but an entity may incorporate as a nonprofit entity without securing tax-exempt status. Key aspects of nonprofits are accountability, trustworthiness, honesty, and openness to eve ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Oakland, California
Oakland is the largest city and the county seat of Alameda County, California, United States. A major West Coast of the United States, West Coast port, Oakland is the largest city in the East Bay region of the San Francisco Bay Area, the third largest city overall in the Bay Area and the List of largest California cities by population, eighth most populated city in California. With a population of 440,646 in 2020, it serves as the Bay Area's trade center and economic engine: the Port of Oakland is the busiest port in Northern California, and the fifth busiest in the United States of America. An act to municipal corporation, incorporate the city was passed on May 4, 1852, and incorporation was later approved on March 25, 1854. Oakland is a charter city. Oakland's territory covers what was once a mosaic of California coastal prairie, California coastal terrace prairie, oak woodland, and north coastal scrub. In the late 18th century, it became part of a large ''rancho'' grant in t ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Myotonic Dystrophy
Myotonic dystrophy (DM) is a type of muscular dystrophy, a group of genetic disorders that cause progressive muscle loss and weakness. In DM, muscles are often unable to relax after contraction. Other manifestations may include cataracts, intellectual disability and heart conduction problems. In men, there may be early balding and an inability to have children. While myotonic dystrophy can occur at any age, onset is typically in the 20s and 30s. Myotonic dystrophy is caused by a genetic mutation in one of two genes. Mutation of the '' DMPK'' gene causes myotonic dystrophy type 1 (DM1). Mutation of '' CNBP'' gene causes type 2 (DM2). DM is typically inherited from a person's parents, following an autosomal dominant inheritance pattern, and it generally worsens with each generation. A type of DM1 may be apparent at birth. DM2 is generally milder. Diagnosis is confirmed by genetic testing. There is no cure. Treatments may include braces or wheelchairs, pacemakers and non ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Preservation Park
Preservation Park is located in Oakland, California. The park includes sixteen historic buildings, five of which stand in their original location, and eleven of which were moved from elsewhere in Oakland, California, Oakland to avoid demolition. The sixteen houses are arranged to resemble a late 19th-century Oakland neighborhood. The park is open to the public during the day (the buildings are not open to the public), and areas are often rented out for parties, meetings and weddings. Many non-profits have offices here. The park is bordered by 12th Street, Castro Street, 14th Street and Martin Luther King, Jr. Way. 13th Street goes into the park and ends at the Latham-Ducel Fountain. Preservation Park Way, a one-way street, starts at the fountain, and ends at 12th Street. The park is next to the African American Museum and Library at Oakland. Buildings Italianate Bartling House, Italianate Row House. Originally stood at what is now the 14th Street freeway overpass. Owned by W ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
501(c)(3)
A 501(c)(3) organization is a United States corporation, trust, unincorporated association or other type of organization exempt from federal income tax under section 501(c)(3) of Title 26 of the United States Code. It is one of the 29 types of 501(c) nonprofit organizations in the US. 501(c)(3) tax-exemptions apply to entities that are organized and operated exclusively for religious, charitable, scientific, literary or educational purposes, for testing for public safety, to foster national or international amateur sports competition, or for the prevention of cruelty to children or animals. 501(c)(3) exemption applies also for any non-incorporated community chest, fund, cooperating association or foundation organized and operated exclusively for those purposes.IR ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Rare Disease
A rare disease is any disease that affects a small percentage of the population. In some parts of the world, an orphan disease is a rare disease whose rarity means there is a lack of a market large enough to gain support and resources for discovering treatments for it, except by the government granting economically advantageous conditions to creating and selling such treatments. Orphan drugs are ones so created or sold. Most rare diseases are genetic and thus are present throughout the person's entire life, even if symptoms do not immediately appear. Many rare diseases appear early in life, and about 30% of children with rare diseases will die before reaching their fifth birthdays. With only four diagnosed patients in 27 years, ribose-5-phosphate isomerase deficiency is considered the rarest known genetic disease. No single cut-off number has been agreed upon for which a disease is considered rare. A disease may be considered rare in one part of the world, or in a particular gro ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
