Latest Activity

Rashad Bakker posted a discussion

giving away

Hi friends,i have lots of things to give away.please contact with me if your interested.i know how expensive-this medical devices and food,diaper and  other lots of daily things are.because my son does not need this any more.he went to heaven on September 2nd 2017th.please contact with me asp.my e-mail is sumonarashad@yahoo.comSee More
Sep 10
Katrina posted a discussion

Not a carrier

A few months ago I had my DNA tested for a variety of reasons, mainly to try to find relatives, as my dad was adopted. I uploaded my raw DNA to a site called Promethease, which checks your data for a wide variety of conditions and disorders. It's seems like it's considered extremely accurate when it comes to recessive genetic disorders. According to Promethease, I am not a carrier for SMA type 1 (or any form of SMA). I lost my daughter Sylvia to SMA type 1 almost 10 years ago. I always assumed…See More
May 19
Brittany Miller is now a member of SMAspace
May 2
wen posted a status
Sep 26, 2016
wen posted a status
"Biogen Completes Rolling Submission of New Drug Application to FDA for Nusinersen as a Treatment for SMA http://tinyurl.com/jqrvctr"
Sep 26, 2016
tj bennett posted a status
Sep 23, 2016
tj bennett posted a status
"AveXis rises as Jefferies finds walking baby believed to be patienthttp://thefly.com/landingPageNews.php?id=2432512"
Sep 20, 2016
tj bennett posted a status
"READ.…"
Sep 19, 2016
tj bennett posted a status
"An update on Nusinersen EAP provided by investigators in London https://twitter.com/SMAresearch"
Sep 16, 2016
Bree Langford is now a member of SMAspace
Sep 16, 2016
tj bennett posted a status
Sep 15, 2016
Misty dobson posted a status
Sep 9, 2016
tj bennett posted a status
"MDACEO $550,000Totalsalaries$60 millionhttp://www.showbiz411.com/2016/09/04/mda-post-jerry-lewis-losing-money-every-year-but-ceo-gets-550000"
Sep 5, 2016
tj bennett posted a status
Sep 2, 2016
tj bennett posted a status
"DuchenneLessonshttp://www.xconomy.com/national/2016/08/26/duchenne-lessons-advocates-for-rare-spinal-disease-have-eyes-on-fda/?"
Aug 26, 2016
tj bennett posted a status
"new hope for SMA.…"
Aug 17, 2016
tj bennett posted a status
"EAPSMA1https://www.facebook.com/theFASTmovement/photos/a.1502369826749829.1073741829.1501908410129304/1667365380250272/?type=3&theater"
Aug 13, 2016
tj bennett posted a status
Aug 11, 2016
tj bennett posted a status
"Read...Heart of Bureaucratic Darkness https://www.facebook.com/gm604forals/posts/1810923665795640"
Aug 11, 2016
tj bennett posted a status
"Duchenne advocates’ wait for an FDA decision nears the six-month mark http://tinyurl.com/jfulzcx"
Aug 5, 2016

SMA Links

The list was getting too long -- b/c there are SO MANY GREAT ORGANIZATIONS raising awareness and funding to cure SMA.  Please visit this link to see the latest list of resources available to the SMA community.

 
 
 

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