Spinal Muscular Atrophy Power and Backup Power

In our experience, power and backup power for Gwendolyn’s various life-critical machines can be — well — a pain in the neck and, when we haven’t been prepared, extremely stressful and dangerous. We feel like we’ve encountered (or stumbled through) just about every power issue and emergency you can imagine over the past several years […]

Spinal Muscular Atrophy Machines and Supplies

In our personal experience, getting your arms around life-critical machines and supplies can be daunting in the process of dealing with a spinal muscular atrophy diagnosis. What will we need? Where will get all this stuff? What do others use? How are we going to figure all of this out? We remember these questions quite […]

Preschool Photo Shoot and the Small Things

Yesterday, Gwendolyn had her preschool photo shoot. She took her class picture with all of her school friends and teachers. And then — just like all of the other kids — she excitedly took her posed solo shots sitting in her purple tumbleform chair in front of a cheesy faux window sill setup She was […]

Stander!

For the last several months at therapy, Gwendolyn has been working hard on practicing in her power chair and perfecting the setup and controls to give her the best opportunity to drive and drive and drive and drive and drive. And while she looooooves her power chair, the last couple of weeks Gwendolyn has been […]

Why We Chose A Pre-Clinical Model As Our Next Research Focus

Taking a step back. Looking at the big picture. Making sure our direction is sensible and methodical. That is why we chose a pre-clinical model as our next research focus. Over the past two years, the Gwendolyn Strong Foundation (GSF) has taken a laser-guided missile approach to funding research, primarily funding specific portions of two […]

RoundUpForSMA.com | Possibly the Simplest Way on the Planet to Support SMA

Okay folks… we think this is quite possibly the simplest way on the planet to support an end to Spinal Muscular Atrophy. It’s called RoundUpForSMA.com and it’s a fundraising partnership between the Gwendolyn Strong Foundation and SwipeGood. Here’s how it works… Go to RoundUpForSMA.com Sign up your credit or debit card Make your credit or […]

Getting Out With Gwendolyn…At Some Point, We Just Started Living

I wrote a blog post in February 2009 titled 25 Honest Things. At the time there was a Facebook “25 Things!” thing going around and…well..these were my 25 things. None of this has much to do with us getting out with Gwendolyn, but I vividly remember a comment to that post from an SMA mom with […]

GSF selected as part of the famous Grand National Roadster Show

We are honored and humbled to have been selected by the Grand National Roadster Show as one of only two charities that will benefit from proceeds of its unique auction. The auction features artwork created by the best pinstripers in the nation and it will be held at the Pinstriper’s Reunion on Saturday, January 29, […]

Our Power Chair Superwoman

Today was an incredible day for us and for Gwendolyn. Her shiny new power chair has been in for about a month, but we’ve been tweaking and fine tuning the set-up weekly so it fits perfectly and provides her the best positioning to drive independently. There are still more tweaks to be made, but today […]

Gwendolyn’s Story on the Floor of Congress Yesterday

Over the years we’ve been pretty outspoken about our experience with health insurance and our health insurance provider, Health Net (see past posts here, here, here, here, and here), and our thoughts on the health care reform legislation that was passed in 2010 (see the article on our family in the New York Times and our post here). With the swearing in […]