Blog
As a disease community, we’ve failed our own miserably
May 04, 2012 by Bill StrongThis past week the spinal muscular atrophy (SMA) disease community has been inexplicably tumultuous -- to say the least. There is no need to relive the details. If you know what I'm referring to, then you know. If you don't, then be thankful that you don't. At the end of the day, as a disease...
Read More >>Team Charlie’s Angels Races in Vancouver Marathon, Raises $3,300
May 02, 2012 by Victoria
Charlie-Anne is a spunky red-headed 2.5 year old. And like all children, she is the apple of her parents eye. She is beautiful. She is smart. And her smile is infectious. Charlie has SMA.
Read More >>Say Hi! AAC | 5,000+ Global Downloads and V1.1 Release with New Features
April 30, 2012 by Bill Strong
We released the original version -- v1.0 -- of Say Hi! AAC in late-February 2012 and since then over 5,000 people around the world have downloaded the free app. That's right! Over five-thousand-people! 5,000 PEOPLE! We've been blown away at the broad use of the app and we are over-the-moon that...
Read More >>Gwendolyn Is Going To Kindergarten
April 25, 2012 by Victoria
Oh my goodness! Oh my goodness! Today is an awesome day. We just got home from touring Gwendolyn's kindergarten. That's right. We met her principal and the teachers, got to go inside the classrooms, talked to the current kindergarten kids, saw all their neat projects and what she will be...
Read More >>Washington, DC SMA Advocacy and Research Trip Update
April 22, 2012 by Bill Strong
Last week, I flew back to Washington, DC for two days packed with meetings on Capitol Hill, the FightSMA researchers conference, and the FightSMA Board meeting. Although much too quick, it was an extremely productive trip. Our advocacy efforts are paying dividends and several promising research...
Read More >>
