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Personal Sites - SMA Type I |
| Links to web sites containing stories and information by Type I parents. |
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| Baby Owen |
| A website for baby Owen Searle. Tells it like it is. |
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| Alisha's Story |
| The story of Alisha Tansey (SMA Type 1), part of the 'On Yer Bikes' fundraising site. |
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| Theo's site |
| Theo's Web Page in Switzerland. A tribute site giving useful links. |
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| Wyatt's Web Site (USA) |
| Wyatt's Web Site in the USA. A tribute site to Wyatt Kyle Sutker. Good information, links and advice. |
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Personal Sites - SMA Type II |
| Links to web sites containing stories and information by people with Type II SMA. |
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| Bernie's Story |
| Bernie is the son of FSMA webmaster Bettylou Ross. His pages have lots of photos of care equipment used to care for him, items made by his parents, water therapy ideas and more! |
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| Toby Mildon |
| Toby Mildon is Vice Chairman of the JTSMA. This is his personal web site. |
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Personal Sites - SMA Type III |
| Links to web sites containing stories and information by people with Type III SMA. |
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| Melissa's pages |
| Good personal pages (Melissa has SMA III) with lots of links. Check out Robert's aquarium. |
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| Woon Ching's Realm |
| A site giving the able-bodied a glimpse about what it is like to live with a disibility (Type III SMA). |
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| Val and Roy Tavener's Website |
| Varied and useful info about SMA III with pages on education, holidays and an overview of scoliosis and its treatment. |
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| Curly Fingers |
| Site telling the story of Fergus Cocker with great information on SMARD. |
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| Online Donation |
| Make a donation to the JTSMA on-line. Secure and tax efficient! |
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| The Weather Lottery |
| Your chance to win 10,000 pounds every day. It only costs a pound a week and benefits the JTSMA. |
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| Buy At |
| Buy a wide range of goods online (such as wine, CDs, furniture, toys, sportswear, electricals, books and printer cartridges; you can even book a holiday). A percentage of the purchase is donated to the JTSMA. |
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| Just Giving |
| JustGiving is allows you to collect donations on-line, e.g. for a sponsored event in aid of the JTSMA. |
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| Onyerbikes fundraising pages |
| Details of a sponsored cycle ride/raffle and an on-line auction to fundraise for the JTSMA. Inspired by Alisha. |
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| Blues for Barbara |
| A blues CD sold in aid of the JTSMA in memory of Ed Stacey's sister Barbara. |
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| French MD/SMA Group |
| Follow the link to the English language version at the top of the opening page. |
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| German Society for Muscle Disorders |
| The German support site for SMA. If you don't speak German, I would suggest using the translation service at www.altavista.com to translate the pages |
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| FSMA Italy |
| Italian Families of SMA support site. If you don't speak Italian, I would suggest using the translation service at www.altavista.com to translate the pages. |
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| ASAMSI |
| Italian SMA medical research association site. If you don't speak Italian, I would suggest using the translation service at www.altavista.com to translate the pages. |
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| SMA Australia |
| Support organisation for people affected by SMA in Australia |
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| CSMA |
| Children with SMA, Ukraine |
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| The SMA Trust |
| The SMA Trust is a UK registered charity working to fund medical research into Spinal Muscular Atrophy |
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| Fight SMA |
| Spinal Muscular Atrophy - Fight SMA. An organization that raises awareness of SMA and money for research. |
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| The Muscular Dystrophy Campaign (UK) |
| The Muscular Dystrophy Campaign in the UK (used to be the Muscular Dystrophy Group). This page will give you access to two versions of their site: one with standard sized text and full graphics or a large text version of the site with diagrams only. |
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| Kennedy's Disease Association |
| Support site for people affected by Kennedy's Disease (also known as Spinal Bulbar Muscular Atrophy, SBMA, or Kennedy's Syndrome). |
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| Equality Direct |
| The Government has launched Equality Direct, an information service for employers on a wide range of equal opportunity issues, ranging from equal pay to better access for people with disabilities. The website and helpline are intended to help employers to resolve management issues and offer information and advice on good practice and the law. Tel:0845 600 3444 |
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| Focus on Disability |
| A source page for lots of information about anything to do with disability. Browse the site, you'll probably find something useful to you. |
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| Genetic Interest Group |
| A support and lobbying group for those interested in genetic research taking a much wider interest than just SMA related matters. |
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| EURODIS |
| The European Organisation for Rare Disorders. |
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| The Charity Commission |
| The Charity Commission provides public confidence in the integrity of charities in England and Wales. |
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| Network 81 |
| A national network of parents working towards properly resourced inclusive education for children with special needs. |
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| Round Table Children's Wish |
| Round Table Children's Wish is a registered charity that grants wishes to children up to the age of 17 throughout Great Britain and Ireland, all of whom have one thing in common - they all suffer from life threatening illnesses. |
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| ACT |
| ACT is an organisation that promotes palliative care on behalf of affected children and families. The site contains information for families and health care professionals. |
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| Special needs family friendly fun |
| Our mission is to: enable families to share experiences, information and inspirations via our newsletter and forum; offer information on fun and helpful topics; and access to web rings and categorized websites links. |
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| UK Self Help Info |
| Use the alphabetical index at the top of the page to find link to self help organisations. |
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| GAIC |
| Web site of the UK government's Genetics and Insurance Committee |
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| Mobility Rip Off |
| A website aimed at tackling companies and salespeople who cheat or mislead disabled customers |
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| RADAR |
| The UK's campaigning and advisory disability body, run by and for disabled people. |
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| BDF Newlife |
| Direct help and care for sick and disabled babies, children and families. |
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People |
| Links to personal sites related to SMA and living with disability. |
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| Helen's HomePages |
| Helen has cerebral palsy. She shares her experiences of life, Christianity and cancer. |
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| Holidays with SMA |
| Jean-Yves community site features home exchanges to allow children with SMA to travel internationally as well as advice and views on holidays. |
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Articles of Interest |
| Links to articles on other web sites related to SMA. |
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| BBC News |
| SMA Baby in 'right-to-life' high court battle. |
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| The SMA WebRing |
| This is the starting point to access lots of SMA pages, some of which are listed here. |
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| Family Village |
| American SMA Page with many links to other SMA pages and sites. |
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| International Patients Registry |
| If you or a member of your family are currently affected by SMA,
please consider registering your details with the International SMA Patient Registry. |
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General Health |
| General health sites |
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| NHS Direct |
| The main National Health Service information site. Not much specific to SMA. |
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| Careline in Wandsworth |
| A lot of local stuff, but still some helpful bits (especially if you live in Wandsworth! ;-). The site search engine is pretty useful. |
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We hope you find our links page really useful, but if you find anything here that is out of date or have any suggestions for further appropriate links, please let us know!
