1. Spinal Muscular Atrophy - Families Of SMA Home Page International support group and resource center for this disease, includes current research.Category Health Conditions and Diseases spinal muscular atrophy......Information on spinal muscular atrophy, Types I, II, II and IV and Kennedy'sDisease. International Alliance for spinal muscular atrophy. http://www.fsma.org/

Understanding Spinal Muscular Atrophy About Families of SMA Local Chapters ... FAQ If your child is newly diagnosed with SMA, please see Coping with a Diagnosis of SMA for help. If you need basic information on SMA - for a research project or personal use - please see Introduction to SMA Be sure you hear about it - when a cure or treatment for SMA is found! Join the FSMA mailing list for updates International Alliance for Spinal Muscular Atrophy FSMA Canada Other Languages Français Español Deutsch Italiano For more translation help, see www.freetranslation.com or www.systransoft.com Make a Donation to FSMA through Network for Good by Families of SMA 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.' Families of SMA was founded in 1984 for the purpose of raising funds to promote research to find a cure for the Spinal Muscular Atrophies, and to support families affected by SMA. Since then, this volunteer-driven, non-profit organization has become the largest private funder of SMA research and the largest non-profit organization dedicated solely to finding a cure for SMA. FSMA has committed $3.5 million to SMA research in 2003 and over $10 million within the next 3 years.

2. Understanding Spinal Muscular Atrophy Offers extensive information for parents about the three forms of this disease type I (WerdnigHoffman Category Health Child Health Neurological Disorders......Understanding spinal muscular atrophy A Comprehensive Guide. WhatIs spinal muscular atrophy? spinal muscular atrophy (SMA) is a http://www.fsma.org/booklet.htm

Understanding Spinal Muscular Atrophy: A Comprehensive Guide Introduction What Is Spinal Muscular Atrophy? Diagnosing Spinal Muscular Atrophy Prognosis ... What Does It Mean? What Are We to Expect? ... How Families of SMA Can Help This booklet is to serve as a source of information and support to those involved with children and adults with Spinal Muscular Atrophy (SMA). Families of SMA was founded by a group of parents of children with SMA Type II. They all continue to be actively involved working to raise money to distribute educational materials, provide patient services and support research, which will lead to a treatment and cure. Research funded by Families of SMA has aided in the discovery of the SMA chromosome, the location of the SMA gene, and the isolation of protein produced by the SMA gene. Whether you have a family member or close friend, your interest in this is probably based on the fact that you or someone you care about is awaiting diagnosis of SMA or has been diagnosed with SMA. We understand the concern that you might have upon hearing the term, Werdnig-Hoffmann, Kugelberg-Welander, Spinal Muscular Atrophy. We've all heard of leukemia, AIDS and cystic fibrosis but Spinal Muscular Atrophy is an unknown.

3. Spinal Muscular Atrophy - SMA Web site promoting public awareness for spinal muscular atrophy.Category Health Conditions and Diseases spinal muscular atrophy......Andrew's Buddies fights spinal muscular atrophy, the leading geneticand inherited cause of infant death. We fund neuromuscular http://www.fightsma.com/

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. SMA Ad Campaign Begins on Capitol Hill A powerful advertising campaign making the case for more federal support for SMA research begins running on March 31 in Roll Call and Congress DailyAM, publications that are read regularly by the Washington, DC political community. The ads were created by the SMA Foundation. To view the three ads, click here Andrew's Buddies would like to thank Davies New Media, Inc. for their contribution of time and dedication to make this site a reality. Please take a moment to visit DaviesIsland.com to view some of the other great work they have produced. 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.

4. JTSMA Home Page Support group with online information booklets available.Category Regional Europe Health Conditions and Diseases...... The Jennifer Trust for spinal muscular atrophy. Help for Today, Hopefor Tomorrow. Please click here now to donate online The Jennifer http://www.jtsma.org.uk/

You are here: Home Home How to use the Web Site New Diagnosis SMA Information News and Views ... Site Map Acrobat Reader Some of the documents on this site are in Portable Document Format. Click to get the free Acrobat Reader The Jennifer Trust for Spinal Muscular Atrophy Help for Today, Hope for Tomorrow The Jennifer Trust is the UK support group for people with Spinal Muscular Atrophy and for their families. Since 1985 the Trust has grown to have more than 1,500 member families, and is in contact with other groups and families all round the world. This pool of knowlege and experience is available through this website and in all the Trust's activities. Read more about the JTSMA Getting Started If you have not used this web site before, or have just received a new diagnosis of SMA and are not sure where to start, please follow one of these links: New Diagnosis SMA Information About the JTSMA Contact the JTSMA ... Site Map Featured Links Weather Lottery Click here Cough Machines The Jennifer Trust have negotiated a preferential deal for families with children with SMA, also adults with SMA, who would like to buy one of these machines. We can also offer a two week no obligation trial of a Manual Cough Assist machine. Read more Looking for a Hippotigerdile?

5. Spinal Muscular Atrophy / Family Village General directory has lists of who to contact and support groups as well as links to related resources. spinal muscular atrophy. See Also Muscular Dystrophy http://www.familyvillage.wisc.edu/lib_spma.htm

Spinal Muscular Atrophy See Also: Muscular Dystrophy Who to Contact Where to Go to Chat with Others Learn More About It ... Search Google for "Spinal Muscular Atrophy" Who to Contact Families of S.M.A. (Spinal Muscular Atrophy) PO Box 196 Libertyville, Illinois, USA 60048-0196 Fax: (847) 367-7623 Website: http://www.fsma.org/ The Families of S.M.A. (Spinal Muscular Atrophy) organization promotes and funds research, provides families with the use of their equipment pool to help alleviate the high cost of medical equipment, promotes public awareness, provides networking, and funds a roster at Indiana University, enabling researchers a central location from which to access necessary family information. They also provide families who have little or no insurance with financial assistance in the purchase of necessary equipment. Families of S.M.A. has local support groups with a directory available. They will provide assistance to individuals who wish to start a chapter in their area, and provide parent-to-parent matching through network listings. SMA publishes a quarterly newsletter, Directions , which is included in membership fees, and offer a brochure that describes the organization. They offer a new parent packet that includes; back issues of the newsletter, information on daily management of affected persons, research updates, and networking. There is also a bibliography of books, a lending library and a video that are available to members. Call or write for further information.

6. 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.

7. Spinal Muscular Atrophy This site contains a collection of material pertaining to SMA. I have been searching facts on SMA ever since our son was diagnosed with the disease in 1994. http://members.rogers.com/mwcunning/sma.htm

8. Melissa's Page On Spinal Muscular Atrophy What it is, what it was like growing up with it, resources and Melissa's wedding pictures. http://home.earthlink.net/~melissa2u/

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

9. Facts About SMA | MDA Publications Facts About spinal muscular atrophy (SMA) Muscular Dystrophy Association Introduction Questions and Answers MDA's Search for a Cause MDA's Search for a Treatment or Cure MDA is Ready to Help INTRODUCTION spinal muscular atrophy primarily affects the http://www.mdausa.org/publications/fa-sma.html

Facts About Spinal Muscular Atrophy (SMA) Muscular Dystrophy Association Introduction Questions and Answers MDA's Search for a Cause MDA's Search for a Treatment or Cure ... MDA is Ready to Help INTRODUCTION Spinal muscular atrophy primarily affects the motor neurons that control the muscles of the body. Facial muscles are mildly affected or unaffected. MDA's effort to help people with SMA is unparalleled.The Association is the world's leading sponsor of SMA research and medical services to those affected by the disorder.In addition to funding a legion of scientists in the forefront of investigations seeking causes of, and treatments and cures for, this group of diseases, MDA also maintains a nationwide network of hospital-affiliated clinics dedicated to helping people with SMA and other neuromuscular diseases in the Association's program. Back to Disease Brochures What's New Diseases Research ... Home

10. Spinal Muscular Atrophy, The Alfred I. DuPont Institute spinal muscular atrophy. 1. Introduction. 2. Understanding spinal muscular atrophy http://gait.aidi.udel.edu/res695/homepage/pd_ortho/educate/clincase/smaab.htm

SPINAL MUSCULAR ATROPHY DAVID J. ABRAHAM, M.D. Resident, Orthopaedic Surgery J. RICHARD BOWEN, M.D. Chief Department of Orthopaedic Surgery ALFRED I. DUPONT INSTITUTE April 16, 1996 CASE HISTORY: Kg is a 6+6 year old white female evaluated in the orthopaedic clinic for progressive scoliosis, bilateral hip dislocations and diffuse hypotonia with inability to walk. Past medical history significant for recurrent upper respiratory infections occasionally requiring hospitalization. Developmental History: 8 pound 6 ounce, full term female with no perinatal events and normal intrauterine movement was developing normally until 6 months of age when parents noticed she stopped moving her legs and lost the ability to roll over. Pediatric neurologist diagnosed Spinal Muscular Atrophy after reviewing the muscle Biopsy. Managed with physical therapy and inpatient rehabilitation consisting of intensive physical, occupational and aquatic therapy and the use of long leg braces at age of 2. Radiographic evaluation at age of 3 showed mild scoliosis and bilateral dislocated hips.

11. SMA.net Main Page A good, though brief (less than 1024 chars), description of your site. spinal muscular atrophy. spinal muscular atrophy (SMA) is the second most common neuromuscular disorder of childhood, http://www.affari.com/smanet

Medical Information What is SMA? References Genetics of SMA ... Browse Public List Welcome to SMAnet The purpose The purpose of SMA .net is to provide a source of information for research, prevention and treatment of Spinal Muscular Atrophy (SMA). Spinal muscular atrophy is a hereditary disorder of the spinal and bulbar motoneurons causing muscle atrophy and weakness, which is usually symmetrical, affects the legs more than the arms and the proximal muscles more than the distal; facial muscles are spared and intellect is normal or advanced. SMA.net is intended to provide information for both the medical and non-medical communities. These pages will be continually updated. SMA.net contents: SMA.net contains local pages as well as pointers to remote sites that contain information related to SMA. SMA database DEMO (public access with username and password = demo) A. Medical information 1. Definition, research and references

12. Ilsa's Spinal Muscular Atrophy (SMA) Resources A detailed description, news and links with information about spinal muscular atrophy. A personal story of a baby, Ilsa. http://www.smaangel.com

Skip Flash Intro View Original Flash Movie View Memorial Flash Movie Skip Flash Intro View Original Flash Movie View Memorial Flash Movie

13. Spinal Muscular Atrophy - SMA Andrew's Buddies fights spinal muscular atrophy, the leading genetic andinherited cause of infant death. What is spinal muscular atrophy? http://www.fightsma.com/whatissma.asp

What is Spinal Muscular Atrophy? TYPE I - Spinal Muscular Atrophy TYPE II - Spinal Muscular Atrophy TYPE III - Spinal Muscular Atrophy (KUGELBERG-WELANDER DISEASE) ADULT - Spinal Muscular Atrophy How is the Diagnosis of Spinal Muscular Atrophy made? The Special Needs Of Children With Spinal Muscular Atrophy Spinal Muscular Atrophy (SMA) refers to a group of diseases which affect the motor neurons of the spinal cord and brain stem. These critically important cells are responsible for supplying electrical and chemical messages to muscle cells. Without the proper input from the motor neurons, muscle cells can not function properly. The muscle cells will, therefore, become much smaller (atrophy) and will produce symptoms of muscle weakness. There are dozens of diseases which affect the motor neuron. SMA is the most common genetically determined cause of infant death. Degeneration and death of the motor neurons (also called Anterior Horn Cells) in the brain stem and spinal cord produces weakness in the muscles of swallowing, breathing, and limbs. This disease afflicts infants, children, and adults worldwide. It is estimated that SMA occurs in between one-in-6,000 and one-in-20,000 births. Recent advances in our understanding of the genetics of this disorder confirm that the majority of children and adults afflicted with SMA, have inherited this disorder by receiving one gene from both their mother and their father. This is termed autosomal recessive genetic transmission. Between one-in-40 and one-in-80 "normal" men and women carry the gene for SMA. If both a man and woman carry the gene, the chances are 25% that any of their children will manifest SMA.

14. WebRing: Hub Allows individuals and families affected by SMA to join their homepages together. http://p.webring.com/hub?ring=smatrophy&list

15. Neurology - Spinal Muscular Atrophy Neurology. spinal muscular atrophy. Jennekens, FG. Medical Therapy in Spinal MuscularAtrophy A Realistic Expectation? Clinical Neurology and Neurosurgery. http://www.mc.vanderbilt.edu/peds/pidl/neuro/spineatr.htm

PIDL Home/ Contents Development Nutrition Acute Illness ... Psychosocial Neurology SPINAL MUSCULAR ATROPHY Spinal muscular atrophy (SMA) is the second most common neuromuscular disorder of childhood, less common only than Duchenne's muscular dystrophy. It is characterized by degeneration of the anterior horn cells of the spinal cord and motor nuclei of the brainstem, causing weakness. There are many forms of the disorder, which may affect specific muscle groups or be generalized and may manifest anywhere from in utero to adulthood. Most forms are genetic. Inheritance pattern may be autosomal recessive (most), autosomal dominant, X-linked, or new mutation. The gene or genes involved in SMA has been localized to chromosome 5q; the identity of the gene product and pathogenesis are areas of intense study. Prenatal diagnosis in known affected families is also under investigation. Interestingly, the clinical features may vary significantly within a given family; the reasons for this are not clear. The incidence is approximately 1:25,000 for SMA in general,with some forms more common than others. There are three main types of SMA occurring in childhood, conventionally divided by age of onset. These will be described in their most typical presentation, although it is important to realize that clinical features and progression overlap. A recent prospective study of 141 patients by Russman et al (Journal of Child Neurology, 10/92) underscored the variability in childhood SMA, suggesting that classification systems are not valid and warning against prognostication based on age of onset.

16. Home Page Information and resources for spinal muscular atrophy. http://www.believe-miracles.com/

Believe in Miracles That's What Makes Them Come True Hey! I'm Cassidy Hi! I'm Skylar We are twins - this makes us special. We are also very special because we have Spinal Muscular Atrophy (SMA) Type 1. SMA is a very serious neuromuscular disease. It has taken the lives of many little children. Doctors say we were born with a bad gene. Scientists from all over the world are trying to fix our bad gene. If they do we could do more things. Wouldn't that be great! We have some really good news . Dr. Burgess from Ohio State University said he has some mice who have SMA just like us. Dr. B. says that when he gives these mice a protein called SMN2 they get better. Also, scientists at John Hopkins just gave some mice these little stem cells and guess what - some of them could move a little more. There are lots of scientists looking for a cure and they are getting closer everyday. Our Mommy and Daddy say that we need to raise money to help the scientists. Some of our friends and family have started a charity called SMA Angels Charity, Inc

17. Andrew's Buddies - Fight Spinal Muscular Atrophy Andrew's Buddies fights spinal muscular atrophy, the leading genetic and inherited cause of infant death. We fund neuromuscular research and SMN, SMA nonprofit drug trials. http://www.andrewsbuddies.com/whatissma.html

18. Families Of Spinal Muscular Atrophy Canada Canadian charity supports research into a cure for SMA. http://www.fsma.org/canada/

Families of Spinal Muscular Atrophy Canada Home Page Version Française P.O. Box 22024 Brandon, Manitoba R7A 6Y9 2003 Annual FSMA Conference for Families and Researchers - join us for this amazing event Spring 2003 Newsletter If you or your child are newly diagnosed with SMA , please see Coping with a Diagnosis of SMA for extra resources. If you need educational information on SMA, please see Introduction to SMA MasTec's Rebecca Run for SMA July 12, 2003 FSMA-Funded Canadian Study Shows Gene Therapy As Possible Treatment for SMA International Alliance for SMA ... Canada News updated July 28, 2002 Letter from the Trustees of FSMAC FSMA (US) Home

19. Sma:Irina's Cozy- Corner In Saratov,travel-culinary-book-psychology. Irina's cozycorner, spinal muscular atrophy page and travel, recipes, book, psychology in english, russian, and italian. http://www.cozy-corner.com/

Italiano Po-russki Irina's Cozy-Corner and SMA page Easter at Cozy's in this site the web SMA Utilities Something Tasty Book Psychology ... My Questions Music Faq Photo Album Horoscope My old Guestbook ... My Guestbook Site map Find a friend Link Forum Halloween Christmas Princess Club ... Italian home a.s. a. m. s.i. Raduga Creations Webmaster Webdesigner I want this site to be a comfy meeting place to exchange thoughts, advice, and resources about life - with or without SMA. Wherever you live, come here and see that we have a lot of things in common. Add to your HomePage Your faves var url = (parent.location.href); document.write('Tell to all friends'); BD: Location: Saratov (Russia) Languages: Russian, English, Italian, Polish, French (2 last understand but don't write)

20. Spinal Muscular Atrophy Resources January 31, 2000 Update Exciting Research Breakthrough News from Families of SpinalMuscular Atrophy Families of spinal muscular atrophy Main fightsma.com http://home.earthlink.net/~melissa2u/links.html

Families of Spinal Muscular Atrophy - Main fightsma.com - the website for Andrew's Buddies Internet Resources for Special Children - SMA Jennifer Trust for Spinal Muscular Atrophy ... How to Keep an Idiot Busy Families of Spinal Muscular Atrophy PO Box 196 Libertyville, Illinois, USA 60048-0196 Muscular Dystrophy Association - USA National Headquarters 3300 E. Sunrise Drive Tucson, AZ 85718 Andrew's Buddies' P.O. Box 785 Richmond, VA 23218-0785 Muscular Dystrophy Association - Australia GPO Box 9932 Melbourne 3001, Australia Freecall: 1 800 656 MDA Home Growing Up What is SMA? Resources ... Vegas Hotels

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