The Power Of One :: Sierra Vista High School Supports Project Mariposa

One person is powerful. One person can make a difference. And one person can reach another person, who in turn reaches another person, and so on and so on. That is our belief. That is our mantra. It always has been. One person, one dollar at a time -- NEVER GIVE UP. And because of Sierra Vista...

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

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...

Mother’s Day for Amanda

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

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...

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

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

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 --...

SB Marathon: Join Team GSF

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...

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

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...

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

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.