24 Mar 2015

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The National Institute of Neurological Disorders and Stroke (NINDS) was air jordan 1 retro high strap black red originally established in 1950. The NINDS conducts and supports research and research training on the causes, prevention, diagnosis, and treatment of neurological disorders and stroke. The Institute awards grants for research projects, program projects, and center grants; provides training support to institutions and fellowships to individuals in the fields of neurological disorders and stroke; conducts intramural and collaborative research; and collects and disseminates research information. Requests for information should air jordan 10 retro bobcats 2014 be directed to the Office of Communications and Public Liaison.

The FDA’s Office of Orphan Products Development (OOPD) is dedicated to promoting the development of products that demonstrate promise for the diagnosis and/or treatment of rare diseases or conditions. To locate such products, the OOPD interacts with the medical and research communities, professional organizations, academia, and the pharmaceutical industry, as well as rare disease groups. The OOPD administers the major provisions of the Orphan Drug Act (ODA) which provide incentives for sponsors to develop products for rare diseases. More than 228 drugs and biological products for rare diseases have been brought to market since 1983.

Accelerated Cure Project for MS (ACP) is a nonprofit organization whose mission is to accelerate efforts toward a cure for multiple sclerosis (MS) by rapidly advancing research that determines its causes and mechanisms. We focus on providing biomedical researchers with resources that catalyze open scientific collaboration and make it possible for them to explore their novel research ideas rapidly and cost efficiently. ACP’s strategic initiatives include the Multiple Sclerosis Discovery Forum, an online community for MS researchers, and the ACP Repository, a large scale collection of highly characterized biosamples available to scientists at any organization conducting research that contributes to our mission. All results generated through analysis of Repository samples and data are contributed back to the ACP Repository Database, resulting in an increasingly valuable and comprehensive information resource that can be analyzed to reveal new insights about MS. To date, ACP has enrolled almost 3,000 participants into the Repository through a network of 10 MS clinical centers across the United States. The samples provided by people with MS and related disorders have supported more than 60 research studies worldwide and generated more than 150 million returned data points.

The Alzheimer’s Association is a nonprofit organization founded in 1980 to heighten public awareness of this degenerative brain disorder, provide support for patients and their families, aid research efforts, and advocate for legislation that responds to the needs of patients and family members of Alzheimer’s Disease. The network includes more than 100 chapters and 1,800 support groups across the country. The Alzheimer’s Association also maintains a toll free 24 hour information and referral telephone number which provides information packets and referral to the nearest Association chapter. The Green Field Library provides air jordan 17 low white university blue standard library services.

The goal of this scientific and educational association of orthopedists and neurosurgeons is to improve the quality of care and directions for patients in the fields of orthopaedics and neurosurgery. The American Academy of Neurological and Orthopaedic Surgeons (AANOS) sets high standards for training, credentialing and surgical education and for the practice of orthopaedics and neurosurgery by teaching through the Journal of the American Academy of Neurological and Orthopaedic Surgery. AANOS also hosts meetings and workshops throughout the year for practitioners in the field.

The American Parkinson Disease Association (APDA) was established in 1961 to provide information about the various services available to patients with Parkinson’s disease and to make funds available for research in new drug therapies and to find a cure. The Association maintains 63 information and referral centers. The centers also provide educational booklets and information concerning health services in their areas, the availability of physicians experienced with the disease, and updated information on new medications. The Association awards fellowships that fund the work of medical researchers. APDA’s support is dependent on contributions. APDA has 58 fundraising chapters and over 800 support groups nationwide.

Additional resources include: 1) APDA National Resource for Rehabilitation; tel. This program provides access to a licensed physical therapist at Boston University’s Sargent College for questions about exercise, information about programs in the caller’s area, and educational materials. 2) APDA National Veteran’s Information Referral Center; tel. This center serves as a centralized resource dedicated to supporting and improving the lives of veterans with Parkinson’s disease and their families.

The Bachmann Strauss Dystonia and Parkinson Foundation (BSDPF) is a nonprofit organization established to find better treatments and cures for the movement disorders dystonia and Parkinson’s disease. The goals of BSDPF are to (1) raise funds to support advanced medical research of Dystonia and Parkinson’s disease, (2) educate patients and the medical community about the most recent advances in treatment and research, and (3) increase awareness of Dystonia and Parkinson’s disease among the general public and the medical community. BSDPF supports research and provides treatment. BSDPF also promotes patient and medical education by providing annual patient symposia focus on Dystonia and Parkinson’s diseases. and Canada with a mission to offer emotional support, provide information and referrals, and to educate others about Batten Disease. The Association assists with the National Batten Disease Registry which is maintained at the New York State Institute for Basic Research in Developmental Disabilities. BDSRA maintains a library of information on the disease; Helping Hands Information Sheets on topics such as seizure care, tube feedings and medications. Books on grief and coping with an ill child, and informational videocassettes are available on loan. Information on medical care, financial assistance, and funding/grants is available through the Association. Services are available at all levels of participation for a membership fee.

This national non profit organization was founded in 1988 by a group of dedicated parents, physicians and friends to improve the treatment, quality of life and the long term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy to families and survivors. Over four million dollars have been given out for cutting edge research projects at leading medical institutions across the country. Support services include the Parent to Parent Network, telephone support groups, educational teleconferences and referrals to social services.

Review Date: February 09, 2009

The Dysautonomia Treatment and Evaluation Center is maintained and supported by the Dysautonomia Foundation, a nonprofit organization founded in 1951, through its 16 local chapters throughout the United States, Canada, and Great Britain. The Center specializes air jordan 2 ii retro carmello anthony melo white university blue varisty maize in the diagnosis and treatment of familial dysautonomia, although they will respond to inquiries on other pediatric patients suspected of having a variant of this disorder or another of the congenital sensory neuropathies. While its primary goal is treatment, data on specific manifestations are accumulated and stored. The Center has a 24 hour telephone answering service and will make referrals. At present over 400 patients with familial dysautonomia are registered. The prevalence rate is one in 3,600 people of Ashkenazi Jewish extraction.

Founded in 1999 and professionally certified as a 501(c) (3) non profit organization in 2002, the Dysautonomia Youth Network of America, Inc. (DYNA) is the first and only 501(c) (3) non profit organization in existence specifically for childhood/adolescent/young adult onset dysautonomia conditions. The organization proudly serves patients, caregivers, families, physicians, researchers, educators and the public at large. Most DYNA members reside in the United States but some members hail from as far away as Australia, New Zealand, Scotland, England, South America, and Singapore. In addition to members reflecting the geographical diversity of dysautonomia conditions, they also reflect the diversity of dysautonomia conditions themselves. Members have a host of conditions such as: Post Viral Dysautonomia, Generalized Autonomic Failure, Neurocardiogenic Syncope (NCS)/Vasovagal Syncope, Postural Orthostatic Tachycardia Syndrome (POTS), Neurally Mediated Hypotension (NMH), Post Viral Dysautonomia, Non Familial Dysautonomia and Multiple System Atrophy.

Review Date: February 26, 2013

The Dystonia Medical Research Foundation (DMRF) is a tax exempt organization, incorporated in 1976, created to increase awareness and understanding of dystonia among doctors and researchers and to spark innovative exploratory research projects directed at finding the causes of dystonia and related disorders. These disorders are characterized by loss of voluntary control over body posture and movement. To date, the DMRF has supported over 400 dystonia specific research grants, totalling over $20 million. The DMRF supports workshops, doctor patient education, and research grants. The Foundation has over 60 chapters and support groups located throughout Air Jordan 16s the United States and Canada and can supply referrals for local treatment. The DMRF is supported by donations from individuals, corporations, and foundations.

The Guardians of Hydrocephalus Research Foundation (GHRF) is a non profit group dedicated to research into the cause and treatment of hydrocephalus. The Foundation operates a laboratory in the Department of Neurology at New York University Medical Center, in which information from clinical and research facilities is integrated air jordan 7 olympic white metallic gold obsidian to provide for better diagnosis and treatment of hydrocephalus, a frequently occurring congenital disorder that can also occur shortly after birth. Hydrocephalus accounts for a large proportion of adult patients with a diagnosis of dementia.

Review Date: November 21, 2008

HDSA is a 501(c)3 not for profit organization air jordan 12 xii original og taxi recognized as a charity in good standing by the IRS(EIN: 133349872) and meets all the required high Standards of Excellence of the BBB Wise Giving Alliance.

HDSA currently supports more than 40 scientists and 16 major HD laboratories in North America and around the world through HDSA Coalition for the Cure with annual grants which range from $40,000 to $100,000 for HD investigations. Twenty one HDSA Centers of Excellence at locations in major hospitals and university medical centers are supported by HDSA across the continental United States. The national office also produces and distributes, free of charge, publications and informational materials on HD and maintains a toll free information hotline to assist physicians, patients and family members. Through 12 HDSA regions, 38 volunteer based chapters and affiliates, 200+ support groups, HDSA reaches out across the nation to offer HD patients and their families guidance, encouragement, resource information and leadership opportunities at HDSA events, meetings and seminars.

Founded in 1983, the Hydrocephalus Association is a national non profit organization. Our mission is to eliminate the challenges of hydrocephalus by stimulating innovative research and providing support, education and advocacy for individuals, families and professionals dealing with the complex issue of the condition. Families are empowered with educational materials, informed about the latest research, and have access to quality health care. The association advocates for increased research and funding to advance understanding, improve diagnosis and treatment, and find a cure.

Review Date: February 14, 2013

Joubert Syndrome is a rare genetic disorder characterized by decreased muscle tone, difficulties with coordination, abnormal eye movements, abnormal breathing pattern and cognitive impairment. These issues are due to abnormal brain development, resulting in decreased size of the cerebellar vermis and other brain abnormalities that appear as the “molar tooth sign” on a brain MRI. Although rare, several hundred individuals with Joubert Syndrome have been reported in the medical literature. Mutations in at least 10 genes cause Joubert Syndrome, accounting for 50% of patients. Subsets of individuals with Joubert Syndrome can also have polydactyly (extra fingers or toes), as well as retinal, kidney and liver disease requiring medical intervention.

Joubert Syndrome is one of a growing group of disorders called “ciliopathies,” caused by dysfunction of a part of the cell called the cilium. The cilium functions as an antenna for many cell types, allowing cells to communicate with each other and sense their environment during the development and function of many organs. In fact, cilia are required to sense light in the eye, odors in the nose and fluid flow in the kidneys and liver. Disruption of cilium function likely explains the incidence of eye, kidney and liver problems in individuals with Joubert Syndrome.

The Les Turner Amyotrophic Lateral Sclerosis (ALS) Foundation is a nonprofit organization that offers support to patients and families living with the day to day difficulties associated with ALS air jordan 8 viii retro ls lifestyle also known as Lou Gehrig’s disease. Services available include the Lois Insolia ALS Center, an out patient clinic with a multi air jordan v laney white varsity maize varsity royal black disciplinary team, at Northwestern Memorial Hospital, Chicago, IL, a visiting nurse program; equipment and air jordan 3 retro sport blue in stock buy now communication system banks; educational materials and programs; and support groups. The Foundation also supports scientific research on ALS; currently this research is being conducted at the Les Turner ALS Research Laboratory at Northwestern University Feinberg School of Medicine, where scientists are working to discover the cause of the disease and ultimately a cure. These experts in the field of ALS help both professionals and patients keep current with ALS research and patient care.

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization dedicated to enriching the quality of life for everyone affected by multiple sclerosis. MSAA provides ongoing support and direct services to these individuals with MS and the people close to them. MSAA also serves to promote greater understanding of the needs and challenges of those who face physical obstacles. In addition to a variety of programs and services such as consultations, equipment distribution, MRI diagnostic funding, and public awareness campaigns MSAA also provides valuable information through its magazine and other literature.

The Multiple Sclerosis Foundation, Inc. (MSF) provides information, referral and support services to professionals, those diagnosed with multiple sclerosis, family members and friends. The mission of the MSF is to provide nationally accessible programs and support services to those persons affected by MS to help them maintain their health, safety, self sufficiency, and personal well being; and to heighten public awareness of multiple sclerosis in order to elicit financial support for the MSF’s programs and services and promote understanding for those diagnosed with the illness.

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