Search Results: MCH Organizations

Annotation: The ALS Association, previously known as Amyotrophic Lateral Sclerosis Association (ALSA), supports research on amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. Association activities include research funding, patient services, public and professional education, chapter development, and the establishment of ALS clinical service centers nationwide. Services provided to consumers include referrals, publications, and reference information. Publications include manuals on managing ALS, Basic Home Care, ALS and The ALS Association, a set of five videos, Reason for Hope (a newsletter published three times a year), and Scientific Briefings (published 2–4 times a year). The association also sponsors conferences.

Keywords: Amyotrophic Lateral Sclerosis, Medical research,, Motor neuron disease, Neuromuscular diseases

Annotation: The Benign Essential Blepharospasm Research Foundation (BEBRF) is an international clearinghouse for information on spasms of the facial musculature (blepharospasm, Meige's syndrome, and hemifacial spasms). The foundation works to eradicate blepharospasm and to support people with the disorder. Activities include sponsorship of continuing education and an annual international conference. The foundation provides referrals, publications, and reference information to consumers. Publications include Benign Essential Blepharospasm, Meige's and Other Related Disorders , a bimonthly newsletter, and a catalog of audiovisual materials. Some materials are available in Spanish. The Foundation also sponsors conferences and workshops.

Keywords: Benign essential blepharospasm, Facial dystonia, Meige syndrome, Neuromuscular diseases, Support groups, Information services,, Vision disorders

Annotation: The Dystonia Medical Research Foundation is a nonprofit organization that works to build awareness of dystonia, a neurological disorder characterized by involuntary muscle spasms that twist the body into painful and disabling postures. The foundation promotes research on the causes of dystonia and sponsors chapters and support groups for people with dystonia and their families. Services to consumers include referrals, publications and reference information. Publications include a newsletter, a quarterly magazine, and pamphlets and age-specific guide books for dystonia families. Audiovisual materials include documentaries, public service announcements on dystonia and a new children's video, I Am Not Dystonia. A catalog is available. Some materials are available in Spanish and French. The foundation sponsors conferences and training seminars.

Keywords: Dystonia, Medical research, Support groups, Information services, Neuromuscular diseases

Annotation: Established in 1984, Families of Spinal Muscular Atrophy (FSMA) is a national organization that funds for research and promotes public awareness of Werdnig-Hoffmann disease, Kugelberg-Welander disease, and Aran-Duchenne adult progressive spinal muscular atrophy (SMA). Services include a referral system (in conjunction with the national SMA registry at Indiana University), a parent network, an equipment pool, and a resource library of print and audiovisual materials. Publications include a quarterly newsletter. The organization provides materials in Spanish and French. FSMA also sponsors conferences.

Keywords: Aran-Duchenne type (Adult progressive spinal muscular atrophy), Benign congenital hypotonia, Kugelberg-Welander disease, Neuromuscular diseases, Patient identification, Research, Education, Spinal muscular atrophy, Werdnig-Hoffmann disease

Annotation: The Myasthenia Gravis Foundation of America facilitates the timely diagnosis and optimal care of individuals affected by myasthenia gravis (a chronic neuromuscular, autoimmune disorder) and closely related disorders. The Foundation provides patient care and services (including support groups for patients and families), advocacy, professional education, a quarterly newsletter, literature on the disorder and its treatment, funds for medical research about myasthenia gravis, and public service announcements. Some resources are available in Spanish. At present, the cause of myasthenia gravis is unknown, and there is no cure.

Keywords: Education, Myasthenia Gravis, Neuromuscular diseases

Annotation: The National Multiple Sclerosis Society (NMSS) is a national voluntary health organization whose mission is to end the devastating effects of multiple sclerosis. Services to consumers include referrals, publications, and reference information. Publications include a magazine and newsletter. Spanish materials are available.

Keywords: Multiple Sclerosis, Neuromuscular diseases