1. Spinal Muscular Atrophy - Families Of SMA Home Page Information on spinal muscular atrophy, Types I, II, II and IV and Kennedy s Disease. International Alliance for spinal muscular atrophy. Other Languages. 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, see Introduction to SMA 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 For more translation help, see www.freetranslation.com or www.systransoft.com Make a Donation to FSMA through Network for Good Contact 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.' Click here to Make a Donation to find a Cure News and Updates Join us at the 2004 FSMA Family and Professional Conference June 18-20, Schaumburg, Illinois

2. Understanding Spinal Muscular Atrophy Understanding spinal muscular atrophy A Comprehensive Guide. What Is spinal muscular atrophy? spinal muscular atrophy (SMA) is a http://www.fsma.org/booklet.htm

3. 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

SPINAL MUSCULAR ATROPHY Introduction Understanding Spinal Muscular Atrophy Bookmarks Special Friends ... GuestBook Introduction Our family lives in Ajax, Ontario Canada. My wife and I have two children. Our youngest child Andrew Since that time I have been searching the internet for information on SMA. I decided to make a web page so that other parents and people who are affected by this disease could find information about SMA. I have been playing around with this page on and off ever since. So come back your sure to see a change. I hope that you will be able to find some information here to answer some of your questions. If you can help me with some ideas I would be very happy. Please take the time to leave a note on my GuestBook . Thank you. Understanding Spinal Muscular Atrophy The following information are direct links to information that you can find at the web site of Families of Spinal Muscular Atrophy (FSMA) . Just to make it a little easier to get to the information directly, just click on the information that you are interested in learning about.You will also find further down on this page my bookmarks with a link to the home page of FSMA.

4. JTSMA Home Page The Jennifer Trust for spinal muscular atrophy. The Jennifer Trust is the UK support group for people with spinal muscular atrophy and for their families. 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 Please click here now to donate on-line Emergency Contact Number Please try the office number first on For Out of Hours contact, for non urgent calls please leave a message on the answer phone. For urgent assistance, you can contact us on 0870 774 3653. Please use this only for newly diagnosed families and those who need to talk to someone immediately. 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:

5. 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.

6. Spinal Muscular Atrophy / Family Village See Also Muscular Dystrophy. Who to Contact. Where to Go to Chat with Others. Learn More About It. Web Sites. Search Google for "spinal muscular atrophy" Who to Contact. Families of S.M.A. ( Spinal 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.

7. 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

8. Spinal Muscular Atrophy spinal muscular atrophy. ( SMA, WerdnigHoffman, Kugelberg-Welander, Kennedy) Families of SMA ( spinal muscular atrophy) P.O. Box 196 http://www.kumc.edu/gec/support/spinal_m.html

Spinal Muscular Atrophy (SMA, Werdnig-Hoffman, Kugelberg-Welander, Kennedy) Families of SMA (Spinal Muscular Atrophy) P.O. Box 196 Libertyville, IL 60048-0196 Phone: 800. 886.1762 or 847.367.7620 Fax: 708. 432.5551 Web page: http://www.fsma.org/ E-mail: sma@interaccess.com Other SMA links Open Letter to Parents of Newly Diagnosed Children Understanding SMA Also See: National organizations , resources on genetic conditions or birth defects Muscular dystrophy / atrophy resources Muscular Dystrophy Association , Canada Neuromuscular Diseases in the MDA Program , Muscular Dystrophy Association SMA Angels Spinal Muscular Atrophy, Werdnig-Hoffmann Disease SMA mini-fact sheet National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD, July 2001 Spinal Muscular Atrophy , GeneClinics Spinal Muscular Atrophy , Muscular Dystrophy Association, Australia Spinal Muscular Atrophy , Vanderbilt Medical Center Spinal Muscular Atrophy I I , (SMA1), OMIM, Online Mendelian Inheritance in Man Spinal Muscular Atrophy Werdnig Hoffman , Pediatric Database Spinal Muscular dystrophy: the Ins and Outs , slide lecture, D Leonard, University of Pennsylvania Health System, Philadelphia, Jan 2000 To locate a genetic counselor or clinical geneticist in your area: Professional Genetics Societies Genetic clinics, centers, departments

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

Wednesday, June 02, 2004 We have posted recent lay summaries of research being funded by FightSMA. Please go to RESEARCH NEWS SUPPORT FIGHTSMA ON MOTHER'S DAY! Order a gourmet gift basket from Baskets Galore for Mother's Day. Baskets Galore will donate $10.00 to FightSMA for each basket sold. Each basket is $50.00 plus shipping and includes: Lavender Shower Gel Lavender Hand Cream Lavender Body Lotion Body Pouf Fruit and Herbal Tea Bags Biscotti Gourmet Basket FightSMA T-Shirt To order, contact: Arlene Jelinek Baskets Galore (757) 581-1413 phone (757) 495-8117 fax Email: ajelinek@cox.net We are truly thankful for Baskets Galore and Arlene's generosity! CHILDREN'S WEAR DIGEST JOINS IN THE FIGHT Exciting news!! We have established a partnership with Children's Wear Digest ("CWD"), a dynamic national line of children's clothing, headquartered in Richmond, for 2004. For Mother's Day, an SMA mother and daughter from this area will be photographed in a pre-selected mother/daughter outfit and pictured with an article explaining what spinal muscular atrophy is and the need for support. A preview of this initiative is posted in the January CWD catalogue. CWD will donate a portion of the proceeds of the mother/daughter's outfit to FightSMA!

10. Medical Information Medical Information Article Detail. Background to spinal muscular atrophy. What is SMA? Types of SMA. Is SMA Hereditary? What is spinal muscular atrophy? http://www.jtsma.org.uk/mdi/sma0.html

You are here: SMA Information Medical Information : Background to Spinal Muscular Atrophy Home SMA Information Medical Information Information Sheets Research Personal Stories (Type 1) Personal Stories (Type 2) ... Site Map Acrobat Reader Some of the documents on this site are in Portable Document Format. Click to get the free Acrobat Reader Medical Information - Article Detail Background to Spinal Muscular Atrophy What is SMA? Types of SMA Is SMA Hereditary? What is Spinal Muscular Atrophy? Spinal Muscular Atrophy is a neuromuscular condition causing weakness of the muscles. How Do Normal Muscles Work? Muscles contract, moving parts of the body, when signals from the brain pass down the spinal cord through the anterior horn cells. Each anterior horn cell is responsible for passing a signal down another nerve to a muscle. The group of structures made up by one anterior horn cell, the nerve fibre and the muscle it supplies, is known as a motor unit (see diagram). What Happens in SMA? In Spinal Muscular Atrophy it is the anterior horn cell which is abnormal. Not all nerve impulses can be passed from the brain to the muscles. The result of this is that some muscles become weak and wasted (atrophied). Next Page: Types of SMA Forthcoming Events News and Views Medical Information ... Personal Stories (Adult Onset) JTSMA, Elta House, Birmingham Road, STRATFORD upon AVON, Warwickshire, CV37 0AQ, U.K.

11. SPINAL MUSCULAR ATROPHY spinal muscular atrophy. The Intermediate Form . A Brochure For Parents and Caregivers. spinal muscular atrophy (SMA) is one of the neuromuscular diseases. 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 Type 2 Intermediate type Type 3 Mild Juvenile SMA, or Kugelberg-Welander disease

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

13. Spinal Muscular Atrophy - SMA 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. and pictured with an http://www.andrewsbuddies.com/

Wednesday, June 02, 2004 We have posted recent lay summaries of research being funded by FightSMA. Please go to RESEARCH NEWS SUPPORT FIGHTSMA ON MOTHER'S DAY! Order a gourmet gift basket from Baskets Galore for Mother's Day. Baskets Galore will donate $10.00 to FightSMA for each basket sold. Each basket is $50.00 plus shipping and includes: Lavender Shower Gel Lavender Hand Cream Lavender Body Lotion Body Pouf Fruit and Herbal Tea Bags Biscotti Gourmet Basket FightSMA T-Shirt To order, contact: Arlene Jelinek Baskets Galore (757) 581-1413 phone (757) 495-8117 fax Email: ajelinek@cox.net We are truly thankful for Baskets Galore and Arlene's generosity! CHILDREN'S WEAR DIGEST JOINS IN THE FIGHT Exciting news!! We have established a partnership with Children's Wear Digest ("CWD"), a dynamic national line of children's clothing, headquartered in Richmond, for 2004. For Mother's Day, an SMA mother and daughter from this area will be photographed in a pre-selected mother/daughter outfit and pictured with an article explaining what spinal muscular atrophy is and the need for support. A preview of this initiative is posted in the January CWD catalogue. CWD will donate a portion of the proceeds of the mother/daughter's outfit to FightSMA!

14. SMA.net Main Page The purpose. The purpose of SMA.net is to provide a source of information for research, prevention and treatment of spinal muscular atrophy (SMA). 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

15. 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)

16. SMA.net SMA groups around the world. Families of SMA (spinal muscular atrophy). promotes public awareness Jennifer Trust for spinal muscular atrophy (JTSMA). http://www.affari.com/smanet/smagroups.html

SMA groups around the world Families of S.M.A. (Spinal Muscular Atrophy) Address: P.O. Box 196, Libertyville, IL 60048-0196, USA Contact: Audrey N. Lewis, Executive Director Marilyn Naiditch, Secretary Phone number: Number of members: approximatly 1500 Activity: Spinal Muscular Atrophy funds research .... provides family networking .... publish quarterly newsletter, "Direction" ... provide equipment pool ... promotes public awareness ... Jennifer Trust for Spinal Muscular Atrophy (JTSMA) Address: 11 Ash Tree Close, Wellesbourne, Warwick CV35 9SA Contact: Anita J Macaulay, Executive Director Phone number: Activity: publish quarterly newsletter, "Holding Hands" Mail comments to merlini@ior.dsnet.it

17. Vehicle Fund Woman born with spinal muscular atrophy, needs help purchasing a vehicle specialized for her needs. http://members.cox.net/vehiclefund/

Vehicle Fund What is the Vehicle Fund? Why support the fund? Who Is Laura? Frequently Asked Questions ... Pictures Updates May 24, 2004 April 25, 2004 March 21,2004 The Goal Goal = $30,000 Received = $4,067 Need = $25,933 What is the Vehicle Fund? Why support the fund? In all modesty, you should support this fund because I am a fabulous person! No, all kidding aside, this fund is designed to give back to the community. First, the initial vehicle purchased with the fund, for me, will enable me to continue working with members of the disability community. My primary job will be to assist individuals with disabilities to increase or maintain their independence through the use of service animals. Top Who Is Laura? My name is Laura, and like Martin Luther King Jr., I have a dream. My dream is to be as independent and self-sufficient as I possibly can be. I was born in 1961 with Spinal Muscular Atrophy. The doctors told my parents that I would not live past the age of 3. I had other plans. On the other hand, I consider myself to be very independent. I left home at the age of 18 and moved across the country to attend the University of Arizona. I have lived on my own since that time. I hire people to assist me with the things I cannot do for myself. I would love to offer you the opportunity to help me make my dreams come true. I will need at least $30,000 in order to drive. I plan to purchase a 2004 Dodge Grand Caravan.

18. Spinal Muscular Atrophy a CHORUS notecard document about spinal muscular atrophy spinal muscular atrophy. 2nd most common autosomal recessive disease in Caucasians degeneration of the spinal anterior horn cells. atrophy and wasting of skeletal muscles http://chorus.rad.mcw.edu/doc/02038.html

CHORUS Collaborative Hypertext of Radiology Musculoskeletal system Feedback Search spinal muscular atrophy 2nd most common autosomal recessive disease in Caucasians pathology degeneration of the spinal anterior horn cells atrophy and wasting of skeletal muscles types SMA I = Werdnig-Hoffman disease: rapidly progressive SMA II = intermediate form SMA III = Kugelberg-Welander disease: slowly progressive uncommon adult forms usual presentations floppy baby arthrogryposis muscle weakness in infancy diagnosis weakness and wasting with areflexia electrophysiology shows anterior horm cell disease genetics linked to chromosome 5q. neuronal apoptosis inhibitory protein (NAIP) gene survival motor neuron (SMN) gene James Lowe, DM BM BS MRCPath - 13 November 1997 Last updated 26 May 2004 Medical College of Wisconsin

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://www.ninds.nih.gov/health_and_medical/disorders/sma.htm

National Institute of Neurological Disorders and Stroke Accessible version Science for the Brain The nation's leading supporter of biomedical research on disorders of the brain and nervous system Browse all disorders Browse all health organizations More about Spinal Muscular Atrophy Studies with patients Research literature Press releases Search NINDS... (help) Contact us My privacy NINDS is part of the National Institutes of Health NINDS Spinal Muscular Atrophy Information Page Synonym(s): Werdnig-Hoffman Disease, Kugelberg-Welander Disease Reviewed 05-27-2003 Get Web page suited for printing Email this to a friend or colleague Table of Contents (click to jump to sections) What is Spinal Muscular Atrophy? Is there any treatment? What is the prognosis? What research is being done? ... Organizations What is Spinal Muscular Atrophy? Spinal muscular atrophy (SMA) is a genetic, motor neuron disease caused by progressive degeneration of motor neurons in the spinal cord. The disorder causes weakness and wasting of the voluntary muscles. Weakness is often more severe in the legs than in the arms. The childhood SMAs are all autosomal recessive diseases. This means that they run in families and more than one case is likely to occur in siblings or cousins of the same generation. Parents usually have no symptoms, but still carry the gene. The gene for SMA has been identified and accurate diagnostic tests exist. There are many types of SMA; some of the more common types are described below.

20. Spinal Muscular Atrophy - Learn More From MedlinePlus Find the latest news stories, overviews, research and more on spinal muscular atrophy from MedlinePlus, the National Library of Medicine's consumer health site. http://rdre1.inktomi.com/click?u=http://www.nlm.nih.gov/medlineplus/spinalmuscul

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