Advocating for the Affordable Care Act: Gwendolyn’s Story (Video)

Over the last several years, we haven’t shied away from lending our voices to advocate on behalf of injustices we have faced. Most of these injustices, if not all, are sides to issues that we may have never become aware of had it not been for the life-altering reality of Gwendolyn’s Spinal Muscular Atrophy diagnosis. […]

Hayden’s Comfy Cushies –> Must Have Padding for the EASyS

SMA families are exceptionally creative — out of necessity and out of devotion. And Hayden Calafiore’s grandmother, Shelly, is proving this once again. There is pretty much one stroller/wheelchair option for SMA Type 1 families — the EASyS. The EASyS is an awesome chair and we have recommended it to countless families — without it, […]

New Awesome SMA Resource: InsideSMA

The Gooden family has been hard at work creating a really incredible resource for SMA families — InsideSMA. I always love when families come up with something new and innovative to help others!!! The tips, tricks, and advice on here are really wonderful. Everything from how to prepare for and manage mucus plugs to strategies […]

New Year’s Resolution? New Bedford Half Marathon!

Feeling the need to challenge yourself? Wanting to get in shape? Thinking about getting involved in philanthropy? Well, you have a little over two months to prepare — the New Bedford Half Marathon is calling YOUR name and so is Team GSF!!! Rated one of the top 25 half marathons by Runner’s World magazine, the […]

Camping!

Three words:¬†Camping with Hayden! Yep and that equals a VERY happy little girl…make that two very happy little girls…and four very happy parents watching them. Visualize: fishing, dancing, camp fire, sparklers, family, FUN! Chris and Jennifer set everything up. They are spending time in Pismo Beach which is only about an hour and half from […]

It Arrived!!! Let the Adventures Begin!

Yep…it’s an extra special, super duper, really big, awesome, stupendous surprise… just in time for Christmas! Gwendolyn’s POWER CHAIR ARRIVED! EEEEEEEEEEEE! Yipee! Yipee! We are pretty darn excited around here…but most importantly, Gwendolyn is OVER. THE. MOON!!! Yesterday all three of us went to Gwendolyn’s therapy appointment with fingers crossed that her chair would really […]

The MDA and Gwendolyn

SMA is a muscular dystrophy disease. Like cancer and its many awful versions, there are many forms of muscular dystrophy that fall under this one umbrella. The Muscular Dystrophy Association was the first organization to really put a face to these many diseases with long and often hard to pronounce names impacting so many people. […]

Great News

Good news — GREAT news! Gwendolyn’s appointment today went really well. All things considered, Dr. Yuan is actually really pleased with how Gwendolyn looks and sounds. Her labs came back excellent. Her x-ray was fabulous. And overall she is in tip-top shape. WHEW! We talked to Dr. Yuan for hours and basically what it seems […]

Some Worry

We are worried. We have been for a month now, but we keep hoping we will see improvement. We keep hoping we aren’t seeing what we are seeing. Gwendolyn just isn’t herself. She isn’t sick. She wants to do and go and see, but her energy is low. She is not coming off bipap for […]

Testing Gwendolyn’s Ambu Bag Before An Emergency

Let’s face it, emergencies are a fact of life for SMA families and we’ve had our share of urgent medical situations over the years with Gwendolyn — collapsed lung, regular mucus plugs, power outages, sudden vomit with fear of aspiration, forest fires, battery failures, life-critical equipment issues, etc. So far we’ve managed to pull Gwendolyn […]