Latest Activity

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
tj bennett posted a status
"Now let's see how long it takes them to start helping everyone."
Aug 1, 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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