Yes, we are feeling pretty good right now and it is all because Gwendolyn seems to be doing a little bit better. Baby steps, but we will take those! Gwendolyn had an okay Saturday, a great Sunday, and an okay Monday. I'm not saying we are in the clea ...
When Gwendolyn was first diagnosed, within two weeks we were hit like a ton of bricks with the reality of SMA -- a consultation trip turned into a month-long hospital stay at Stanford, new routines, new machines, a surgery, so much uncertainty, a failed ...
Thank you all so much for your thoughtfulness and concern for Gwendolyn this week. Gwendolyn is status quo and we are still very worried...but very hopeful. We are seeing improvements in some areas, but are still waiting in others. There is still uncertai ...
Sweet Lucy Zahn has inspired a team of supporters! Her spunky spirit is motivating people to not only learn about SMA, but to get involved in helping end it! Team "Lucy's Legs" will be riding 90 miles around Lake Winnebago this weekend in Race The La ...
Gwendolyn is still having a tough time. She hasn't bounced back the way she usually does after antibiotics and we are feeling a bit on edge (well, we are always on edge, but more so). We are having more tests done to try to get to the bottom of it al ...
We asked families impacted by SMA to submit a photo and share something they would want others to know about them/their child. And this is what we received. Speechless. Simply speechless.These families and their stories represent what this disease really ...
Earlier this week the City of Santa Barbara officially declared August as SMA Awareness Month for the third year in a row. The City of Santa Barbara has consistently been supportive of our efforts to end SMA and Mayor Helene Schneider has always been extr ...
Awesome things are happening around the globe for SMA Awareness Month and some are dee-lish. Sweet Amanda Cardoze just celebrated her 1st birthday yesterday. At just one-year-old she is already a warrior -- a big smiling, pool-loving snuggler. Amanda has ...
Before unexpectedly driving 5 hours north to Stanford, we had a fabulous planned long weekend 5 hours east of Santa Barbara visiting some great friends in Las Vegas, Nevada. Viva Las Vegas! Whoa, the G-Van is really racking up the miles these days... Gwen ...
We are home! We are home! And everyone is doing fine. Gwendolyn is such a trooper, but she definitely had enough of being poked and prodded and beamed from ear to ear as we marched out those hospital doors -- in a Dorothy dress no less and with new toys ...
