|
Ben's Friends
Ben's Friends is an American non-profit organization that serves people with rare diseases. It was founded in 2007 by Ben Munoz and Scott Orn and was granted 501(c)(3) nonprofit status on February 9, 2014. It is headquartered in Austin, Texas. Ben's Friends runs over 30 online communities, each focused on a specific rare disease or chronic illness. Its mission is to provide patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, a place to connect with others. Ben's Friends communities are managed by approximately 100 volunteer moderators, most of whom are patients themselves. The organization was founded in 2007 by Ben Munoz and Scott Orn during Munoz's recovery from a rare brain aneurysm caused by an arteriovenous malformation (AVM). In early 2008, Munoz and Orn started two more communities, Living With Ataxia and Living With Trigeminal Neuralgia. Ben's Friends has served over 50,000 members, with more than 100,000 online visitors ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Non Profit Organization
A nonprofit organization (NPO), also known as a nonbusiness entity, nonprofit institution, not-for-profit organization, or simply a nonprofit, is a non-governmental (private) legal entity organized and operated for a collective, public, or social benefit, as opposed to an entity that operates as a business aiming to generate a profit for its owners. A nonprofit organization 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. Depending on the local laws, charities are regularly organized as non-profits. A host of organizations may be non-profit, including some political organizations, schools, hospitals, business associations, churches, foundations, 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 e ... [...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, the term orphan disease describes a rare disease whose rarity results in little or no funding or research for treatments, without financial incentives from governments or other agencies. Orphan drugs are medications targeting orphan diseases. Most rare diseases are genetic in origin 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. Fields condition is considered the rarest known disease, affecting three known individuals, two of whom are identical twins. With four diagnosed patients in 27 years, ribose-5-phosphate isomerase deficiency is considered the second rarest. While no single number has been agreed upon for which a disease is considered rare, several efforts have been undertaken to ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
501(c)(3) Organization
A 501(c)(3) organization is a United States corporation, Trust (business), 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) organization, 501(c) nonprofit organizations in the US. 501(c)(3) tax-exemptions apply to entities that are organized and operated exclusively for religion, religious, Charitable organization, charitable, science, scientific, literature, literary or educational purposes, for Public security#Organizations, testing for public safety, to foster national or international amateur sports competition, or for the prevention of Child abuse, cruelty to children or Cruelty to animals, animals. 501(c)(3) exemption applies also for any non-incorporated Community Chest (organization), community chest, fund, Cooperating Associations, cooperating association or foundation organized and operated exclusively for those purposes. [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Austin, Texas
Austin ( ) is the List of capitals in the United States, capital city of the U.S. state of Texas. It is the county seat and most populous city of Travis County, Texas, Travis County, with portions extending into Hays County, Texas, Hays and Williamson County, Texas, Williamson counties. Incorporated on December 27, 1839, it is the Metropolitan statistical area, 26th-largest metropolitan area in the United States, the List of United States cities by population, 13th-most populous city in the United States, the List of cities in Texas by population, fifth-most populous city in the state after Houston, San Antonio, Dallas, and Fort Worth, and the second-most populous state capital city after Phoenix, Arizona. It has been one of the fastest growing large cities in the United States since 2010. Downtown Austin and Downtown San Antonio are approximately apart, and both fall along the Interstate 35 in Texas, I-35 corridor. This combined metropolitan region of San Antonio–Austin met ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Chronic Illness
A chronic condition (also known as chronic disease or chronic illness) is a health condition or disease that is persistent or otherwise long-lasting in its effects or a disease that comes with time. The term ''chronic'' is often applied when the course of the disease lasts for more than three months. Common chronic diseases include diabetes, functional gastrointestinal disorder, eczema, arthritis, asthma, chronic obstructive pulmonary disease, autoimmune diseases, genetic disorders and some viral diseases such as hepatitis C and acquired immunodeficiency syndrome. An illness which is lifelong because it ends in death is a terminal illness. It is possible and not unexpected for an illness to change in definition from terminal to chronic as medicine progresses. Diabetes and HIV for example were once terminal yet are now considered chronic, due to the availability of insulin for diabetics and daily drug treatment for individuals with HIV, which allow these individuals to live wh ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Aneurysm
An aneurysm is an outward :wikt:bulge, bulging, likened to a bubble or balloon, caused by a localized, abnormal, weak spot on a blood vessel wall. Aneurysms may be a result of a hereditary condition or an acquired disease. Aneurysms can also be a wikt:Special:Search/nidus, nidus (starting point) for clot formation (thrombosis) and Embolism, embolization. As an aneurysm increases in size, the risk of rupture increases, which could lead to uncontrolled bleeding. Although they may occur in any blood vessel, particularly lethal examples include aneurysms of the circle of Willis in the brain, aortic aneurysms affecting the thoracic aorta, and abdominal aortic aneurysms. Aneurysms can arise in the heart itself following a Myocardial infarction, heart attack, including both Ventricular aneurysm, ventricular and atrial septal aneurysms. There are congenital atrial septal defect, atrial septal aneurysms, a rare heart defect. Etymology The word is from Greek language, Greek: ἀνεύρ ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Arteriovenous Malformation
An arteriovenous malformation (AVM) is an abnormal connection between arteries and veins, bypassing the capillary system. Usually congenital, this vascular anomaly is widely known because of its occurrence in the central nervous system (usually as a cerebral AVM), but can appear anywhere in the body. The symptoms of AVMs can range from none at all to intense pain or bleeding, and they can lead to other serious medical problems. Signs and symptoms Symptoms of AVMs vary according to their location. Most neurological AVMs produce few to no symptoms. Often the malformation is discovered as part of an autopsy or during treatment of an unrelated disorder (an " incidental finding"); in rare cases, its expansion or a micro-bleed from an AVM in the brain can cause epilepsy, neurological deficit, or pain. The most general symptoms of a cerebral AVM include headaches and epileptic seizures, with more specific symptoms that normally depend on its location and the individual, in ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Trigeminal Neuralgia
Trigeminal neuralgia (TN or TGN), also called Fothergill disease, tic douloureux, trifacial neuralgia, is a chronic pain, long-term pain disorder that affects the trigeminal nerve, the nerve responsible for sensation in the face and motor functions such as biting and chewing. It is a form of neuropathic pain. There are two main types: typical and atypical trigeminal neuralgia. The typical form results in episodes of severe, sudden, shock-like pain in one side of the face that lasts for seconds to a few minutes. Groups of these episodes can occur over a few hours. The atypical form results in a constant burning pain that is less severe. Episodes may be triggered by any touch to the face. Both forms may occur in the same person. Pain from the disease has been linked to mental health issues, especially depression (mood), depression. The exact cause is unknown, but believed to involve loss of the myelin of the trigeminal nerve. This might occur due to Nerve compression syndrome, n ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Ataxia
Ataxia (from Greek α- negative prefix+ -τάξις rder= "lack of order") is a neurological sign consisting of lack of voluntary coordination of muscle movements that can include gait abnormality, speech changes, and abnormalities in eye movements, that indicates dysfunction of parts of the nervous system that coordinate movement, such as the cerebellum. These nervous system dysfunctions occur in several different patterns, with different results and different possible causes. Ataxia can be limited to one side of the body, which is referred to as hemiataxia. Friedreich's ataxia has gait abnormality as the most commonly presented symptom. Dystaxia is a mild degree of ataxia. Types Cerebellar The term cerebellar ataxia is used to indicate ataxia due to dysfunction of the cerebellum. The cerebellum is responsible for integrating a significant amount of neural information that is used to coordinate smoothly ongoing movements and to participate in motor planning. A ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Adrenoleukodystrophy
Adrenoleukodystrophy (ALD) is a genetic disorder, disease linked to the X chromosome. It is a result of fatty acid buildup caused by failure of peroxisome#Metabolic functions, peroxisomal fatty acid beta oxidation which results in the accumulation of very long chain fatty acids in tissues throughout the body. The most severely affected tissues are the myelin in the central nervous system, the adrenal cortex, and the Leydig cells in the testes. The long chain fatty acid buildup causes damage to the myelin sheath of the neurons of the brain, resulting in seizures and hyperactivity. Other symptoms include problems in speaking, listening, and understanding verbal instructions. Clinically, ALD presents as a heterogeneous disorder, showing several distinct phenotypes, and no clear pattern of genotype–phenotype correlation. As an X-linked disorder, ALD presents more frequently and severely in males; however, approximately 80% of heterozygote females show some symptoms later in life. ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Fibromyalgia
Fibromyalgia (FM) is a functional somatic syndrome with symptoms of widespread chronic pain, accompanied by fatigue, sleep disturbance including awakening unrefreshed, and Cognitive deficit, cognitive symptoms. Other symptoms can include headaches, Abdominal pain, lower abdominal pain or cramps, and Depression (mood), depression. People with fibromyalgia can also experience insomnia and extreme sensitivity. The causes of fibromyalgia are unknown, with several pathophysiologies proposed. People with fibromyalgia are sometimes accused of imagining their symptoms. Fibromyalgia was first recognised in the 1950s, and defined in 1990, with updated criteria in 2011, 2016, and 2019. Fibromyalgia is estimated to affect 2 to 4% of the population. Women are affected more than men. Rates appear similar across areas of the world and among varied cultures. Symptoms of fibromyalgia are persistent in most patients. The treatment of fibromyalgia is Symptomatic treatment, symptomatic an ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
