Latest Activity

tj bennett posted a status
"Share Your Voice with the FDA Deadline: September 8 http://events.curesma.org/site/PageNavigator/General/FDASurvey.html"
Friday
wen added a discussion to the group NJ Families
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Respite care / extra nursing hours question

We currently have daily 16 hour coverage, but seeking respite care coverage.  Horizon NJ would approve for facility admission but not extra nursing hours.  A facility is not an option for us since we have a SMA 1 kid and she's fragile.  I explained that and they wouldn't budge saying what if the nurse cancelled and there was no coverage.  We wouldn't trust our daughter with anyone that is not trained by us and familiar with her care.  I'm pretty sure my daughter wouldn't be happy surrounded by…See More
Aug 21
Lorraine Howard replied to Lorraine Howard's discussion My Book out this week!
"Thank you! X"
Aug 20
Lorraine Howard replied to Lorraine Howard's discussion My Book out this week!
"Hi Lisa.... I would be really happy for my book to be included! Let me know the webpage when you've got it up and running and if your on Facebook, please add me. I thought smaspace was no more so I never come on here and check my messages x"
Aug 20
Lisa Oltmans left a comment for Bonnie MacBean
"Welcome to SMA Space Bonnie!"
Aug 20
Lisa Oltmans replied to Betty's discussion Where to find the good video named "daily respiratory care a sma family" that used to be distributed on www.smaspace.com
"Check out the "How To" videos by B4SMA on www.youtube.com"
Aug 19
Lisa Oltmans replied to Lorraine Howard's discussion My Book out this week!
"Lorraine,  I am putting together a webpage with links to all books by or about SMA.  Can I include your book on my page?"
Aug 19
Lisa Oltmans left a comment for Lucia Rein
"Welcome to SMA Space, Lucia.  Have you registered your son with https://smaregistry.iu.edu/Members/ ?  There are many new drugs and treatments in the works.  www.curesma.org and www.smatrust.org are good sources of information."
Aug 19
Lisa Oltmans left a comment for Nick Winter
"Welcome to SMA Space, Nick."
Aug 19
Lisa Oltmans left a comment for Tiffany Moses
"Welcome to SMA Space Tiffany.  Have you registered with http://www.curesma.org/support-care/newly-diagnosed/ ?  Be sure to register at https://smaregistry.iu.edu/Members/ My heart goes out to you."
Aug 19
Lisa Oltmans left a comment for Amber
"Welcome to SMA space Amber.  Have you found www.smatrust.org ?  Its a support group in the UK. My heart goes out to you as you start your journey in our SMA community."
Aug 19
Lisa Oltmans left a comment for Brett Way
"Welcome to SMA Space Brett. "
Aug 19
Bonnie MacBean posted a photo
Aug 19
Bonnie MacBean posted a photo
Aug 19
tj bennett posted a status
"Read and share-Arms for Asher - Fighting SMA @August 17 at 5:18pm SMA Community. https://www.facebook.com/armsforasher?ref=nf"
Aug 19
Profile IconBrett Way, Amber, Tiffany Moses and 3 more joined SMAspace
Aug 18
tj bennett posted a status
"'The doctors are convinced that the drug is working';ABC news -SMNRx: https://twitter.com/RNAiAnalyst/status/633523987570655232"
Aug 18
tj bennett posted a status
Aug 18
tj bennett posted a status
"Should patients pay their way into clinical trials?http://tinyurl.com/nvvqhlc"
Jul 30
tj bennett posted a status
"Scientists coaxed the development of muscle from adult stem cell. http://www.nanotech-now.com/news.cgi?story_id=51951"
Jul 23

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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