1. Spinal Muscular Atrophy - Families Of SMA Home Page Information on spinal muscular atrophy, Types I, II, II and IV and Kennedy s Disease. Information on cause, genetics, therapy, research, daily life. http://www.fsma.org/

Understanding Spinal Muscular Atrophy About Families of SMA Local Chapters ... FAQ Be sure you hear about it - when a cure or treatment for SMA is found! Join the FSMA email list for research updates FSMA Canada International Alliance for Spinal Muscular Atrophy Other Languages Français Español Deutsch Italiano and More For more translation help, see www.freetranslation.com or www.systransoft.com Welcome to the web site of Families of Spinal Muscular Atrophy - a comprehensive, on-line information and resource center. We invite you to explore our pages and reach out to our 'extended family.' Click here to Make a Donation to find a Cure Announcements Hurricane Katrina SMA Families Relief contact us if you need help or can offer help August is SMA Awareness month - see Resources and Ideas to help you FSMA Research Compass - a new publication from FSMA devoted exclusively to research FSMA Family and Professional Conference June 23 - 25, 2005 - Philadelphia -

2. The Spinal Muscular Atrophies | MDA Research Provides information aimed at health professionals about this disease. Includes definition, classification, epidemiology, clinical features, therapy and research into the congenital condition. http://www.mdausa.org/research/munsat.html

The Spinal Muscular Atrophies by Theodore L. Munsat, M.D. Director, Neuromuscular Research Unit, New England Medical Center Hospitals, Professor of Neurology and Pharmacology, Tufts University School of Medicine, Boston, Massachusetts. "The Spinal Muscular Atrophies," by Theodore L. Munsat M.D., a long-time MDA Researcher. From CURRENT NEUROLOGY, Chapter 3, Vol. 14, 1994, pp. 55-71. Used by permission of Mosby-Year Book, Inc. Note: Numbers in "(_)" denote footnotes. DEFINITION AND CLASSIFICATION This chapter was written as a review of the spinal muscular atrophies (SMAs) for the practicing neurologist. Emphasis in text and references will be placed on developments in the past 5 years on the background of a general review of the subject. The SMAs constitute a group of neuromuscular disorders defined by a disease process limited to the anterior horn cell (AHC). Other neurologic systems and other organs are rarely involved. Many patients with SMA have a family history of similarly affected individuals, and the phenotypic similarity between familial and nonfamilial cases suggests that the sporadic disease may also be inherited. Most patients with SMA experience clinical onset in childhood and demonstrate autosomal recessive inheritance. A smaller number show autosomal dominant or X-linked inheritance, and onset begins later in life. A major breakthrough occurred in 1990 when the gene causing the more common autosomal recessive childhood-onset SMA was mapped to the proximal portion of the long arm of chromosome 5.(1) Subsequent work has progressively narrowed the suspect region, and it is anticipated that within the near future the gene will be cloned, its protein product identified, and an effective therapy devised for the first time. Importantly, these developments have already led to reliable prenatal testing.

3. Home Support group with online information booklets available. http://www.jtsma.org.uk/

You are here: Home Search JTSMA Site: Home How to use the Web Site New Diagnosis Information and Support News and Events ... How You Can Help Welcome to the web site of the Jennifer Trust for Spinal Muscular Atrophy. Please do get in touch by phone or email - we are here to give you the information and support you need. Jennifer Macaulay Type 1 SMA The Mission of the Jennifer Trust for Spinal Muscular Atrophy (JTSMA) is to be there for everyone affected by or involved with Spinal Muscular Atrophy (SMA), providing support and information, and investing in research. The JTSMA is the only British organisation dedicated to providing support, care, information and the funding of research into SMA. New diagnosis? Please follow this link We offer a wide range of services and information for people who are affected by SMA. By clicking on the buttons you can easily access our support and care services, information on research and how you can support our work. SMA is a genetic neuromuscular condition. It causes muscle weakness and can cause respiratory and nutritional complications. 1 in 40 of the UK population are thought to be carriers of the gene that causes SMA. The JTSMA is proud to be a Founder Member of The International Alliance for Spinal Muscular Atrophy (IASMA) and the International SMA Patient Registry © JTSMA, Elta House, Birmingham Road, STRATFORD upon AVON, Warwickshire, CV37 0AQ, U.K.

4. Spinal Muscular Atrophy Foundation - SMA Information on spinal muscular atrophy (SMA), and the latest updates in research, treatment and funding. http://www.smafoundation.org/

SMA Home Goals and Objectives SMA Coalition Science Home ... Other Funding Sources The mission of the Spinal Muscular Atrophy Foundation is to accelerate the development of a treatment or a cure for SMA, the number one genetic killer of infants and toddlers. The Foundation is dedicated to preventing the death and suffering of thousands of children whose lives depend upon increasing research funding to fulfill the scientific opportunity to cure the disease. SMA Foundation News Forbes Magazine features in-depth story on SMA and the SMA Foundation "The National Institutes of Health spends $13 million a year researching the disease – one-ninth what it spends on cystic fibrosis, which afflicts twice as many kids. Biotech firms have largely ignored the disease. This despite a plethora of basic research breakthroughs abroad that made SMA ripe for drug development." For full article, click

5. Spinal Muscular Atrophy - SMA Web site promoting public awareness for spinal muscular atrophy. http://www.fightsma.com/

Friday, September 09, 2005 Research News Andrews Buddies/ FightSMA News Chapters ... Links Southern Living highlights SMAsquerade! Corinna and Hillary Duff!! lll l Welcome ...to fightsma.com, the website for Andrew's Buddies/FightSMA. This is a national organization committed to accelerating a cure for spinal muscular atrophy (SMA), the number-one inherited killer of children under two. On this site, you will find up-to-date reports from the research front. And you will find ways that you can become involved in this fight yourself. FightSMA reaches out to Katrina victims Support SMA in Style! FightSMA.com and FightSMA SM are programs of Andrew's Buddies Corp., P.O. Box 785, Richmond, VA 23218-0785. : All information contained in the Andrew's Buddies Web Site is intended for informational purposes only. Andrew's Buddies does not endorse any specific treatment or strategies. Andrew's Buddies strongly recommends the consultation of a physician to assess individual conditions and needs. Martha Slay, President, FightSMA

6. Spinal Muscular Atrophy - Families Of SMA Home Page Information on spinal muscular atrophy, Types I, II, II and IV and Kennedy's Disease. Information on cause, genetics, therapy, research, daily life . http://tmsyn.an.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

7. Families Of SMA: Understanding Spinal Muscular Atrophy spinal muscular atrophy (SMA) is a motor neuron disease. SMA affects muscles throughout the body, although the proximal muscles (those closest to the http://www.fsma.org/booklet.shtml

dqmcodebase = "http://www.fsma.org/js/" Families of Spinal Muscular Atrophy Advancing Research. Supporting Families. Balancing Life's tough times. Understanding SMA Home New Diagnosis Donate Join FSMA ... News Understanding Spinal Muscular Atrophy Printer-friendly format Introduction What Is Spinal Muscular Atrophy? What Causes Spinal Muscular Atrophy? ... How Families of SMA Can Help This booklet is intended to serve as a source of information and support for children and adults with Spinal Muscular Atrophy (SMA). It was created by Families of SMA (FSMA). FSMA is the largest international organization dedicated solely to eradicating SMA by promoting and supporting research, helping families cope through informational programs and support, and educating the public and the medical community about SMA. For more information about FSMA, visit http://www.CureSMA.org or call 1-800-886-1762. What Is Spinal Muscular Atrophy? Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers. SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body - i.e. shoulders, hips, and back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected. Involvement of respiratory muscles (muscles involved in breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems. Sensation and the ability to feel are not affected. Intellectual activity is normal and it is often observed that patients with SMA are unusually bright and sociable. Patients are generally grouped into one of four categories, based on certain key motor function milestones.

8. Families Of SMA Canada Re-direct Canadian charity supports research into a cure for SMA. http://www.fsma.org/canada/

This page has been renamed. Your browser should automatically redirect you, but if it does not please click http://www.fsma.org/canada/default.shtml Thank you, Families of SMA Canada

9. Families Of SMA Understanding Spinal Muscular Atrophy Families of spinal muscular atrophy Advancing Research. Supporting Families. Balancing Life's tough times. Understanding SMA http://tmsyn.an.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

10. SPINAL MUSCULAR ATROPHY spinal muscular atrophy (SMA) is one of the neuromuscular diseases. In juvenile spinal muscular atrophy children are able to walk, although with http://www.mda.org.au/specific/mdasma.html

FACT SHEET Spinal Muscular Atrophy "The Intermediate Form" A Brochure For Parents and Caregivers Spinal Muscular Atrophy (SMA) is one of the neuromuscular diseases. Muscles weaken and waste away (atrophy) due to degeneration of motor neurones which are nerve cells in the spinal cord. Normally, these motor neurones relay signals, which they receive from the brain, to the muscle cells. When these neurones fail to function, the muscles deteriorate. The brain and the sensory nerves (that allow us to feel sensations such as touch, temperature, pain etc.) are not affected. Intelligence is normal. From the description just given it can be seen why the condition is called Spinal Muscular Atrophy - the muscles atrophy because of a problem in the nerve cells in the spine. What are the common types of SMA? In general we can distinguish three common types of SMA in childhood : Type 1 Severe Infantile SMA, or Werdnig-Hoffmann disease

11. Spinal Muscular Atrophy - SMA Web site promoting public awareness for spinal muscular atrophy. http://tmsyn.an.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

12. Hill Family Donation Fund Family with medical needs seeking people around the world to help. Plus background information on spinal muscular atrophy, progress report and donor list with links. http://www.celestialnet.com/hill-family-donation-fund/

Hello and thank you for taking your time to visit this site. Here is my story Hello My name Is Richard, I am 35 years old. I have a form of Muscular Dystrophy called (KW and or SMA3, Also Known As; Kugelberg - Welander Disease, or S pinal M uscular Atrophy type III You can read more on the right side about it. I now live in Arizona, transplanted from Southern California. My father retired in 2002. We, my mother, father, and myself moved here because the cost of living in Southern California was to high for a family on a fixed income. I am fully disabled and my father collects social security retirement. We are just barely getting by, and it's getting harder with the monthly medical bills. My father suffered a stroke April, 28th 2003 and rang up a rather large hospital bill. My mother is unable to work as she is my father's full time care giver. I have been reluctant about making this page and sharing my story with the world. But I am taped out of ideas. I am seeking donations to purchase a handicapped van with a wheel chair lift/ramp. Or a wheel chair lift for my car. (See pictures below, click for larger view)

13. SPINAL MUSCULAR ATROPHY FACT SHEET spinal muscular atrophy "The Intermediate Form" A Brochure For Parents and Caregivers http://tmsyn.an.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

14. Muscular Dystrophy Association| Diseases - Intermediate Spinal Muscular Atrophy Intermediate spinal muscular atrophy (SMA or SMA2) (Also known as SMA Type 2) See Facts About spinal muscular atrophy above.) http://www.mdausa.org/disease/sma2.cfm

Search Our Site Enter Your Zip Code: Click on your state for local offices in California Florida or New York Genetics and Neuromuscular Diseases Breathe Easy: Respiratory Care for Children with MD Skills for the Job of Living: OT for Adults ... Accessing Medical Services Receive e-mail news, tips and updates from MDA or ask us a quick question. Intermediate Spinal Muscular Atrophy (SMA or SMA2) (Also known as SMA Type 2) Definition Cause Onset Symptoms Progression Most doctors now consider SMN-related SMA to be a continuum of severity and prefer not to make rigid predictions about life expectancy or weakness. Inheritance Facts About Spinal Muscular Atrophy Disease-Specific Materials Facts About Spinal Muscular Atrophy "Ask the Experts" Responses about SMA

15. Melissa's Page On Spinal Muscular Atrophy Personal web page about spinal muscular atrophy. Describes growing up with the disease and current events in Melissa's life. http://www.geocities.com/sma4mel/

Melissa's Page on Spinal Muscular Atrophy Hi, my name is Melissa, welcome to my page about Spinal Muscular Atrophy. I know that we are all different, and that a neuromuscular disease doesn't affect us all in the same way, so I decided to do this page from a totally personal point of view, on how SMA affected me as I grew up. My hope is that it might be of help to kids and/or their parents, who might just be finding out they have a neuromuscular disease, who don't know much about it, how it might affect them or what they might expect on down the line. It is my hope that kids and/or their parents not only find my page informative, but also that when they leave here, they might leave with a little less fear of, and a little more hope for, the future. If you are viewing this text, your browser lacks the ability to read frames. Don't worry, you can still visit my site. Please come inside! Melissa's Page

16. Facts About Spinal Muscular Atrophy MDA Publications Facts About spinal muscular atrophy (SMA) Muscular Dystrophy Association Alexis Villa of California, born in 1995, has type 3 SMA. http://tmsyn.an.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

17. MedlinePlus: Spinal Muscular Atrophy From the National Institutes of Health; spinal muscular atrophy (National Overviews; Quick Facts about spinal muscular atrophy (Families of Spinal http://www.nlm.nih.gov/medlineplus/spinalmuscularatrophy.html

@import url(http://www.nlm.nih.gov/medlineplus/images/advanced.css); Skip navigation Other health topics: A B C D ... List of All Topics Spinal Muscular Atrophy Contents of this page: From the NIH Overviews Diagnosis/Symptoms Genetics ... Organizations Search MEDLINE/PubMed for recent research articles on Spinal Muscular Atrophy You may also be interested in these MedlinePlus related pages: Muscular Dystrophy Neuromuscular Disorders Brain and Nervous System Genetics/Birth Defects From the National Institutes of Health Spinal Muscular Atrophy (National Institute of Neurological Disorders and Stroke) - Short Summary Overviews Quick Facts about Spinal Muscular Atrophy (Families of Spinal Muscular Atrophy) Spinal Muscular Atrophy (SMA) (Muscular Dystrophy Association) Also available in: Spanish Understanding Spinal Muscular Atrophy: A Comprehensive Guide (Families of Spinal Muscular Atrophy) Also available in: Spanish Diagnosis/Symptoms About Kennedy's Disease: KD Symptoms (Kennedy's Disease Association) Creatine Kinase Test (Muscular Dystrophy Association) Electromyography and Nerve Conduction Velocities (Muscular Dystrophy Association) Muscle Biopsies (Muscular Dystrophy Association) Disease Management Physical Therapy for Spinal Muscular Atrophy - A Brief Overview (Families of Spinal Muscular Atrophy) Specific Conditions Hidden Twist...Scoliosis

18. Spinal Muscular Atrophy (SMA) Webring Allows individuals and families affected by SMA to join their homepages together. http://p.webring.com/hub?ring=smatrophy&list

19. NINDS Spinal Muscular Atrophy Information Page spinal muscular atrophy (SMA) information page compiled by the National Institute of Neurological Disorders and Stroke (NINDS). http://tmsyn.an.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

20. MedlinePlus Medical Encyclopedia: Spinal Muscular Atrophy spinal muscular atrophy is a group of inherited diseases that cause spinal muscular atrophy (SMA) is the second leading cause of neuromuscular disease. http://www.nlm.nih.gov/medlineplus/ency/article/000996.htm

@import url(/medlineplus/images/advanced.css); Skip navigation Medical Encyclopedia Other encyclopedia topics: A-Ag Ah-Ap Aq-Az B-Bk ... Z Spinal muscular atrophy Contents of this page: Illustrations Alternative names Definition Causes, incidence, and risk factors ... Prevention Illustrations Superficial anterior muscles Alternative names Return to top Werdnig-Hoffmann disease Definition Return to top Spinal muscular atrophy is a group of inherited diseases that cause progressive muscle degeneration and weakness, eventually leading to death. Causes, incidence, and risk factors Return to top Spinal muscular atrophy (SMA) is the second leading cause of neuromuscular disease. It is inherited as an autosomal recessive trait (a person must get the defective gene from both parents to be affected) and has an incidence of approximately 4 per 100,000 people. In its most severe form (SMA type I, also called Werdnig-Hoffman disease), infants are born floppy with weak, thin muscles and feeding and breathing problems. Their lifespan seldom exceeds 2 to 3 years. Infants with SMA type II have less severe symptoms during early infancy, but they become progressively weaker with time. Survival time with type II is longer, but the disease kills most of those affected while they are still children. SMA type III is the least severe form of the disease, and symptoms may not appear until the second year of life. Often

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