Latest Activity

tj bennett posted a status
"Tell FDA to stop denying ALS patients treatment options http://tinyurl.com/h2azetr"
Jan 30
tj bennett posted a status
"Many parents and advocates believe the FDA provides more lip service to rare disease community than action. http://tinyurl.com/zxkk4vo"
Jan 27
tj bennett posted a status
"Concerns us all-DMD Clinicians View Natural History differently than FDA? https://twitter.com/Mad_Scientist2/status/690635878998351872"
Jan 23
Adeline is now a member of SMAspace
Jan 16
tj bennett posted a status
"We want cures, they want riches...Gene therapy AveXis files for a $115 million IPO http://bit.ly/1Qcb6xi"
Jan 16
Lisa Oltmans left a comment for Matt Cunningham
"So sorry for your loss.  I lost my son in 2010.  Their memories live on..."
Jan 11
Lisa Oltmans left a comment for Matt Cunningham
"Welcome Matt.  I have your book listed on the resources page of my website: http://www.lisascottoltmans.com/#!resources-for-sma/cg5v "
Jan 11
tj bennett posted a status
"SMA patients need a Dr. advocate like this:January 6, 2016 for the Sarepta http://jettfoundation.org/blog/dr-ronald-cohn-written-testimony/"
Jan 9
tj bennett posted a status
"If these drugs were approved, there is certainly enough data 4 approval of $IONS Nusinersen. http://tinyurl.com/jm49yex"
Jan 5
tj bennett posted a status
"Gene Editing Offers Hope for Treating Duchenne Muscular Dystrophy http://tinyurl.com/zdokx9h"
Jan 2
Sujith Nair is now a member of SMAspace
Dec 21, 2015
tj bennett posted a status
"Incredible...Watch...Arms for Asher - Fighting SMA Together http://tinyurl.com/jmb5k8g"
Dec 19, 2015
tj bennett posted a status
"Parents press Biogen for accessible medicines http://tinyurl.com/zqgz37d"
Dec 4, 2015
tj bennett posted a status
"Drug maker was focused on profits, not patients "I'm telling you, this is the future," said Sen. Ron Wyden, http://tinyurl.com/nce5258"
Dec 1, 2015
Matt Cunningham is now a member of SMAspace
Nov 22, 2015
tj bennett posted a status
"no drug for patients but you can ring register? http://finviz.com/insidertrading.ashx?oc=897667&tc=7"
Nov 14, 2015
tj bennett posted a status
"Nashwauk family one of thousands petitioning for life-prolonging drug http://tinyurl.com/qja5n42"
Nov 14, 2015
tj bennett posted a status
"Big-Pharma Seeks Monopoly Over Life-Changing Therapy , all they see is dollar signs..http://tinyurl.com/ndyhote"
Nov 12, 2015
Viktoria Moskalenko is now a member of SMAspace
Nov 7, 2015
tj bennett posted a status
"Partnering for Cures "Stop talking and start doing something," says Mike Milken https://twitter.com/fastercures/status/661607029778341890"
Nov 7, 2015

Forum

Looking for families in similar situation

Started by Edda Arnaldsdottir in Parenting Oct 4, 2015. 0 Replies

My Book out this week!

Started by Lorraine Howard in Other. Last reply by Lorraine Howard Aug 20, 2015. 7 Replies

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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