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JTSMA Links Page
Links we find useful
(Comments by Dan Everard)
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This page is divided into sections, click here to jump to the one you want, or scroll down to browse the list.
This list is always being added to, please use the reply box at the bottom of the page to send us any link to do with SMA that you think others would find useful, and we will include it if we can.Please let me know if you find that one of the links is broken, thanks.
- Cybervillage Super Search page, direct access to lots of types of search engines kept up to date as they change. If you need information you could do worse than start here.
Groups of Affiliates:
Other Organisations:
- ASAMSI, Italian SMA support site (Check out the walking shoes on the index page) good links page and mail list; though it helps to speak Italian!
- Australian Muscular Dystrophy Associatian, big big site with lots of information and links; has section devoted to SMA.
- 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.
- The Charity Commission: need I say more?
- Community Care site, a good general purpose health site.
- Contact a Family in the UK. A goldmine of information about disability in general. There is a subscription section, but guests are catered for.
- Information for disabled people: this site is very much under construction, but the concept is good. Probably worth visiting now and again as it grows.
- Disability Rights Commission: "Our vision: A society where all disabled people can participate fully as equal citizens".
- Families of SMA Home Page in the USA.
URL has changed, change your bookmarks!
- French MD/SMA Group, a heavily Java-scripted site. Follow the link to the English language version ... high right on the opening page.
(If you don't have a Java-script enabled browser this site won't work.)
- Family Village SMA page.
- 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.
- Genetic Interest Group. A support and lobbying group for those interested in genetic research taking a much wider interest than just SMA related matters.
- Glaxo Neurological Centre, plenty of general information.
- Kennedy's Disease Association: Support site for people affected by Kennedy's Disease.
- 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.
- Muscular Dystrophy Ireland. The support group for those with SMA in Ireland.
- Netdoctor a general information magazine type of site ... useful to browse through.
- NHS Direct lots and lots of health resources, though I couldn't find SMA in the encyclopædia!
- Network 81 the organisation which campaigns for and supports integrated education, and provides good information for parents of statemented children. A slow website, some of the navigation links don't look like links but do work.
- www.startpagina.nl; Heavily Javascripted links system, don't worry you won't have to speak Dutch, the links are good and lots more than SMA or MD. Pretty useful, thanks Rene!
- UKSelfHelp a huge directory of support groups for lots of disabilities. Filed under disability name, so JTSMA is under 'S' and Scope is under 'C'.
- The JTSMA Chat Group is a general forum for any questions or suggestions from people whose lives are affected by SMA. Click the logo below for fast access for existing group members.
If you want to join the group click here.
(Even if you belonged to the old chat group you will need to join this one separately).
- The SMA WebRing. This is the starting point to access lots of pages, some of which are listed here.
- Healing Way e-group: this site has heavy graphics and commercial content, but goes faster than it used to! Member of the SMA webring.
- Billy's site (heysma.com) ... a veritable handbook for living with Type III SMA. day to day living, coping, devices, wheel chairs, &c.
- Brionni's Website, a tribute site to Brionni Alexander. Check out Brionni's Walk pages in the fundraising section on this site.
- "Brian Newton's Wheel About" pages. Australian support group for people with physical disabilities.
- Christina's Realm: well worth the visit.
- Holidays for the disabled information site, uses peoples personal experiences as the source of data.
- Julia's Jump: Julia Molony is a granny who is going to do a parachute jump for charity. The trouble is that she's scared of flying and uses a wheelchair, Julia also has Spinal Muscular Atrophy. GO FOR IT!
- Kimi's page: Kimi has a Batchelor's degree in Biology/Chemistry (rather a good one!), and has been accepted to take a Masters in Bioethics ... find out more.
- Lou Everard's article on Early Mobility. I'm biased, but if you're considering wheelchairs for young children this should be part of your research.
- Melissa's pages - good personal pages (Melissa has SMA III) with lots of links. Check out Robert's aquarium.
- Mike Cunning's SMA links page - lots of links!
- Onyerbikes, Sponsered cycle ride and a raffle to fundraise for the JTSMA. Inspired by Alisha and organised by Chris Tansey this is a super site and well worth the visit.
The site now has a fundraising auction section
- Phoebe's Iceberg: Craig Wilkinson's page about the Phoebe's Iceberg CD which is being sold to raise funds for JTSMA -- Craig does the Type I page in Holding Hands and this is his first go at using the www, go take a look!
- Theo's Web Page in Switzerland. A tribute site giving useful links.
- Tufty's NutTree, personal stuff and cheerful too :-)
- Val and Roy Tavener's re-written Website with a changed URL. Varied and useful info about SMA III with pages on education, holidays and an overview of scoliosis and its treatment.
- Wyatt's Web Site in the USA. A tribute site to Wyatt Kyle Sutker which is really informative ... good information, good links, good advice; need I say more? Go for it, Steve!
- Personal Stories. Tribute pages (on this site) written by parents of children with Type I SMA. More than stories, these contain lots of information and experiences which you might want to share.
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© JTSMA, 2000