Do Something. Make a Difference. August is SMA Awareness Month!

August is SMA awareness month and since you are reading this you probably already have a general idea about this brutal disease and why increasing awareness of it is so necessary. Over the next few weeks we will be asking things of you. We will be challenging you to get more involved. We will be […]

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 […]

Gwendolyn Tests Tobii and an Act of Kindness Leaves Us Speechless

We are speechless. Completely without words. Doors are opening for our little girl and because of an incredible act of kindness, they are opening even faster. Yesterday we had a trial for the Tobii Eye Gaze Communication Device. This “computer” is able to detect and follow Gwendolyn’s eyes and how she moves them. Using her […]

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 […]

Ninth Graders Host Spaghetti Banquet To End SMA and Raise Over $4,000

Children helping children…it gets me every time! And I love it! Students at Hopkins West Junior High in Minnetonka, Minnesota were asked to select a charity to design a service project around. And they chose Spinal Muscular Atrophy and the Gwendolyn Strong Foundation! But these students didn’t simply end there. They went above and beyond, […]

Little Star and Gwendolyn in Santa Barbara News-Press

You all know that Little Star is Gwendolyn’s animal BFF. She loves him so much and he loves her. I’ve written about them here, here, and here. We are so lucky that Diane (Little Star’s Mommy) is such a dear friend. She always includes us and she always, always makes Gwendolyn feel special. We met […]

Rummage To Cure –> We Need Your Treasures

Okay GSF supporters –> We need your treasures! It’s that time of year again — Rummage To Cure benefiting the Gwendolyn Strong Foundation! Don’t have time to do a major spring clean? You can still make a difference –> We know cleaning out the garage is a big task and you have helped us make […]

Sign Petition To Keep Newborn Screening Program Effective

Newborn Screening is one of the most successful public health programs ever. Each year babies are treated because of it. But it is being threatened and needs your support. Sign This Petition The Newborn Screening Program first began in the 1960s for PKU. PKU is a condition in which a baby is born without the […]

Santa Barbara Winter Wine Down A Success!

Last weekend was the Muscular Dystrophy Association’s 2011 Winter Wine Down in Santa Barbara and it was a huge success. This is the first year the event has been in down town SB (it was previously held in Santa Ynez) and it is the very first year that 100% of the proceeds were dedicated to […]

Climbing Again for SMA

The inspiring Jadon’s Hope and Jim Baker are at it again! And with them you know it’s going to be something BIG. As if¬†climbing the 23,000 foot Mt. Aconcagua and raising over $45,000 for GSF’s “$200K For SMA” fundraising campaign wasn’t impressive enough, Jim Baker will be tackling the famous Mt. Rainier in Washington in […]