Comments on: What does a Cure for Spinal Muscular Atrophy Mean?

By: Mark

Mark — Fri, 02 Oct 2009 02:18:28 +0000

Hi. I’ve got SMA too. My understanding is that most of SMA specific research is more geared towards treating children before they lose to many lower motor neurons, or preventing further loss in adults. But I think that there’s a lot of other more general biology and biotechnology research in the pipelines that will help adults with SMA in one way or another. If you’re interested in helping or learning about research the international SMA patient register might be of interest (https://smaregistry.iu.edu/)

By: Mandi

Mandi — Mon, 28 Sep 2009 19:48:22 +0000

I’m also 28 and wonder the same thing. I would say that you should dream for the day when there is a cure but not long for it. OR anoher way to say live in the present and hope for the future. I just saw an article here http://www.stemcellschina.com/index.php/en/sma—ms.-loredana
I have to admit my mind was racing and my eyes almost cried when I read the improvements. I would love to be able to walk again (stopped walking around age 11). I would love to be able to chase my daughter around and dance with my husband. Wonderful dreams and they in a way keep me going.

By: Dominick

Dominick — Wed, 16 Sep 2009 17:22:03 +0000

Hey Anthony. I was diagnosed at 4. I went into a wheelchair at 16. I know what you mean about wanting to hope for the best. Hope is a powerful thing. It is better than giving up all hope completely. I think its good to stop all progression period, but also, reversal would be an added bonus. We are thinking on the same wavelength.

By: Dominick

Dominick — Wed, 16 Sep 2009 17:19:48 +0000

Hey David. Thanks for your comment. I agree, I’d very much like to sit up on my own and be able to help with transfers. I do believe this will be positive for those of us with SMA, but I’m not exactly sure what to expect, so I guess that was more the point of my post. Fear of the unknown perhaps?! Here’s hoping it helps us all!

By: David K

David K — Wed, 16 Sep 2009 15:21:32 +0000

Hiya, I also have Type 3 SMA and am very excited about the recent breakthroughs in finding a cure. I find that any extra help will be a benifit, I haven’t walked since I was 13, it would be nice to give it a go to get on my feet again if there was help with a cure. It would be great even if I became less tired after doing simple tasks or even to have more strength in doing simple stuff like sitting up and transferring from my wheelchair. I think when a treatment does come everyone with SMA should make the most of it by doing what they can to get their bodies in the best shape possible! peace out

By: Anthony

Anthony — Wed, 16 Sep 2009 07:34:52 +0000

I am 19 and have type III as well, was diagnosed when i was 16 when i started getting weaker. i can still walk, but need a stick, though i need to get lifted out of anything lower then a stool. I have heard the same things and following a couple of sites, and have been wondering the same thing. what does the treatment do? does it completely reverse it? or just halt it from getting any worse… im sure by the time the treatment comes i will be in a wheel chair by then. but the hope of the treatment is what makes me more cheerful in a day. any hope is better then no hope at all, or else id be alot more depressed.