Gwendolyn Strong Foundation - Blog

Team Jenna Raises $3,000 and Runs in Buffalo Half Marathon Again

Thu, 24 May 2012 15:42 GMT

This Sunday Team Jenna is once again running the Buffalo Half Marathon and they've raised an amazing $3,000 to help change SMA. All in honor of this sweet little girl. This is Jenna. She's 7 years old, is in the first grade, and loves princesses -- really loves princesses. She even got to be Sleeping Beauty in her school play -- a definite highlight of the year. Jenna is also courageous and incredible and is adored by her wonderfully loving family. Jenna has SMA.

Mother’s Day for Amanda

Tue, 15 May 2012 23:06 GMT

I spent Mother’s Day holding Gwendolyn. She was especially snuggly that day... or she knew that I needed her cuddles.

We learned early Sunday morning that our dear friends Marcela and Juan lost their beautiful daughter Amanda. Amanda had SMA. She was only 21-months-old.

Project Mariposa :: {WEEK FIFTEEN} Grants #36 - 38

Fri, 11 May 2012 19:20 GMT

Project Mariposa {WEEK FIFTEEN}. In honor of Mother's Day, today's Project Mariposa grants are going to three very deserving mothers. Being a mother is difficult. Being a mother with SMA brings an entirely new set of challenges: lifting your child up, going to a park with uneven flooring, chasing after your busy baby... Each of these women are incredibly brave and try not to let their disabilities hinder their life -- especially in their role as devoted mothers. We hope these iPad grants help make their lives just a little bit easier. Congratulations Laurie, Nicole, and Dawn!

Project Mariposa {Month THREE} Recap: Grants #32-35

Fri, 11 May 2012 15:38 GMT

Each Friday, we announce the newest Project Mariposa grantees on theGSF Facebook Fan Page. We love Fridays and are always so excited to share each person's story. So if you missed them, here are the most recent grant recipients. Meet Project Mariposa grant recipients #32 to #35:

Mud Run Complete

Thu, 10 May 2012 18:00 GMT

Mud. Obstacle courses. Being fierce and ferocious. Screaming our warrior cry. Feeling empowered. Kicking some SMA butt with some killer SMA moms. Survivor Mud Run = Complete.

When I committed to doing the Survivor Mud Run, it was on a whim. But this experience was definitely a powerful one -- one that has given me strength. It is not often that I get to tangibly feel like I am fighting SMA. Sure, we are fighting every single day...

SB Marathon: Join Team GSF

Mon, 07 May 2012 14:33 GMT

So you want to be part of Team GSF in the Santa Barbara International Marathon, Half Marathon, or Relay? AWESOME! We are continually inspired by those who push their physical strength to the limits to help conquer a disease that robs children of theirs. Whether this is your first race or you are a seasoned pro, we welcome all runners to join us on November 10, 2012 as Team GSF once again competes in the relay, half and full marathon. We run so one day children with SMA can too

As a disease community, we’ve failed our own miserably

Fri, 04 May 2012 14:00 GMT

This 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 community, we've failed our own miserably. We all need to live with that fact. And the only way to even try to move forward is not to rewrite history or sweep it under the rug, as some are trying to do. But for all in the community to honestly reflect and make a united vow that we'll learn from this, own our mistakes, say those apologies, make those changes, and never let this happen again. If we can't do this, as a disease community we're in deep trouble and the future of SMA -- on all levels (support, awareness, research) -- will suffer greatly.

Team Charlie’s Angels Races in Vancouver Marathon, Raises $3,300

Wed, 02 May 2012 15:31 GMT

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.

Say Hi! AAC | 5,000+ Global Downloads and V1.1 Release with New Features

Mon, 30 Apr 2012 14:40 GMT

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 more than 5,000 people around the world can now communicate because of our Say Hi! AAC iPad app. We're also excited to announce the release of v1.1 of Say Hi! AAC. v1.1 has new features and functionality based on ongoing testing of the app.

Gwendolyn Is Going To Kindergarten

Wed, 25 Apr 2012 19:51 GMT

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 learning, and even played on the playground for a minute...