Please select a Route Map

SMA TYPE 1

SMA TYPE 1

SMA TYPE 2

SMA TYPE 2

SMA TYPE 3

SMA TYPE 3

ADULT ONSET SMA

ADULT ONSET SMA

SMA WITH RESPIRATORY DISTRESS (SMARD1)

SMA WITH RESPIRATORY DISTRESS (SMARD1)

 

Feedback

If you have any feedback about the route maps please contact us: http://www.smasupportuk.org.uk/contact-support-services

 

Feedback received about the SMA Type 2 Route Map:

“I absolutely love the look and feel of this site—it’s clear, concise, has exactly the right information and is visually very clear.  Being dyslexic, even I found my way around the site incredibly easily.” (Medical professional)

“It looks great. Everything is really well explained and clear.” (Parent)

“I thought I knew a lot but even I learnt a few things.” (Adult with SMA Type 2)

“I think it’s great. I like how easy it is to use and how everything is spelt out step by step. Good job.” (Parent)

“Really excellent and easy to navigate (even for someone as hostile to electronic communication as I am!).” (Medical professional)

“The new route map looks very good, easy to navigate with lots of relevant, useful information. I have passed it on to all my neuromuscular colleagues.” (Neuromuscular Specialist Care Advisor)

“It is a really nice resource for both families and professionals so thank you it’s really great.” (Researcher)

“It looks great and is very simple to use. Thank you so much.” (Parent)

“Thank you so much for sharing this. I’m sure it has taken a huge amount of work, which is reflected in a fantastic end product – well done to everyone involved!” (SMA Trust)

“I haven’t had time to look at every area, but what I have looked at (especially the “adult” area) appears excellent. I must congratulate you on an extremely useful “document”. Quite clearly, many of the issues discussed are equally applicable to other neuromuscular disorders causing similar mobility issues (Duchenne, Becker, congenital muscular dystrophies) and I suspect our care advisor and physio will find it a useful resource. Congratulations on an excellent piece of work.” (Medical professional)

“I am amazed at the information you have compiled. This is so useful and I can see me using it frequently. Thank you so much. Well done, great piece of work.” (Medical professional)

“This looks terrific, I will circulate.” (Medical professional)

 

Feedback received about the SMA Type 3 Route Map:

“Another comprehensive and impressive piece of work which I’m sure will be much appreciated. Well done and thanks for sharing.” (Professional)

“This is amazingly good. When I was diagnosed 30 years ago there was nothing.” (Adult with SMA Type 3)

“The route map looks great and is very easy to use. I think this is an absolutely fantastic resource.” (Professional)

I am well impressed. It is something that many people would have appreciated having years ago so it is good to have it available in its updated form. Even I can follow it with my limited techno ability.” (Professional)

Yesterday I had gone in to see the clinic team and we all were full of praise for your website. Everyone thinks it is very good. Well done on a good piece of work.” (Retired neuromuscular nurse specialist)

“Thanks for the link. I think it is a fantastic development for SMA 3. I have asked the link to be disseminated to the rest of our network.” (Medical professional)

“This is a very nice link to give to patients and families.” (Medical professional)

“Many thanks this is very very helpful” (Medical professional)

“It looks terrific, congratulations. I will send it to my large network of genetic nurses and genetic counsellors.” (Professor of Genetics)

“That’s fantastic!! Thank you so much for sending this through.” (Advocacy Worker)

“It is an amazing piece of work. I particularly like the issues of puberty, sexual health, relationships and parenting.” (Medical professional)

“I think this is an amazingly comprehensive route map that doesn’t seem to leave anything out at all! I am so impressed. Wish we had it years ago.” (Parent of an adult with SMA Type 3)

“I really like the way the medical words have a pop up to explain them. I love the lay out, uncluttered, easy to follow. I could skim read it if I needed to find something in a hurry. I suspect that professionals will use this as much as families.” (Neuromuscular Nurse Practitioner)