Team Grace Talley

Team Grace Talley Follow Grace's fight against Spinal Muscular Atrophy Type 1 (the #1 genetic killer of infants) receiving the 1st ever treatment of SMA approved Dec. 2016!

Grace Talley, was born 9 months ago. As she grew and developed, her parents noticed she began to miss developmental milestones such as lifting her head and sitting up unassisted. After seeing a neurologist Grace was diagnosed with a devastating terminal disease called Spinal Muscle Atrophy Type 1. SMA is a genetic disease that affects the motor nerve cells of the spinal cord, taking away the ability to walk, eat or breathe. It is the number one genetic cause of death in infants. SMA affects approximately 1 in 10,000 babies, and about 1 in every 50 Americans is a genetic carrier. (To learn more about SMA visit curesma.org.) Besides being a terminal disease, the most heartbreaking aspect of SMA is there is no cure and no current treatments available to fight it. Treatments and therapies are currently being developed but there is nothing available yet. Grace is the only child of Justin and Kalie Talley, a young couple in their early 20's who live in the small town of Livingston, Montana. Both have full time jobs to make ends meet. In order to give Grace the best life possible and allow Kalie to spend the most of what time Grace has taking care of her, the funds for this campaign would help pay bills so Kalie can work less and spend more time caring for her sick baby. In addition, the funds would be used for travel expenses to children's hospitals in neighboring states for upcoming necessary procedures such as feeding tube and Gtube insertion, etc.

03/18/2025

1st time skiing!!

SMA won't stop her!! My little speed demon got in some time on the slopes today. A HUGE thank you to the volunteers with...
03/18/2025

SMA won't stop her!! My little speed demon got in some time on the slopes today. A HUGE thank you to the volunteers with Eagle Mount that helped us get her set up in a Bi-Ski and helped her have a BLAST! One more lesson in a couple weeks and then our school Ski PE trip!!

I truly encourage EVERYONE of all ages to watch this movie. This movie is probably one of the most relatable movies I ha...
11/26/2024

I truly encourage EVERYONE of all ages to watch this movie. This movie is probably one of the most relatable movies I have ever come across of our daily life with Grace and navigating the world and school. It hits home HARD. The obstacles and struggles we face/have faced all the time, whether its insurance, social or the education system. (fighting to attend kindergarten was awful) The main character is only 2 yrs older than Grace and I see so much of her in this movie. I will forever be greatful for the people who are like Dr. Catherine and Mrs. V in this movie that we have come across, in this crazy life that has often knocked us down. They have helped us rise again and kick life in the ass. I hope everyone that watches this learns something from it. I hope that i am teaching Grace to properly stand up for herself and others and that she will forever be unapologetically herself in every way. I hope she owns all her sass and humor and kindness and stubbornness and smarts and wit. Everything. She is perfect exactly as she is.

And like Mrs. V says "You're gonna have people helping taking care of you the rest of your life. At some point, you better learn just because someone wipes your ass doesn't mean you have to kiss theirs."

⛰️ Took Grace on her first hike in the powerchair. Hiked to Palisade Falls on the fully paved trail and then had a picni...
09/09/2024

⛰️ Took Grace on her first hike in the powerchair. Hiked to Palisade Falls on the fully paved trail and then had a picnic. Then got some FroYo on the way home. It was a good day ⛰️

First Day of 4th grade for my girl 💜
08/23/2024

First Day of 4th grade for my girl 💜

On this day 4 yrs ago Evrysdi became FDA approved as the 3rd available treatment for SMA. Grace has been receiving Evrys...
08/07/2024

On this day 4 yrs ago Evrysdi became FDA approved as the 3rd available treatment for SMA. Grace has been receiving Evrysdi as our treatment choice since November 2020! She had plateaued on her previous treatment (Spinraza) and went from having a Lumbar Puncture every 4mo to getting a med via gtube daily! Its so much more convenient for us all and much less traumatic 💜

There are currently 3 FDA approved treatments for SMA. They are not cures but they make a big impact on stability of the...
08/06/2024

There are currently 3 FDA approved treatments for SMA. They are not cures but they make a big impact on stability of the disease and preventing progression as well as strength gains for some. Grace has received 2 of the 3 treatments. She did over a dozen doses of Spinraza via lumbar puncture from age 2 1/2 to age 5. And switched to Evrysdi in Nov. 2019. She is too old for the 3rd treatment (Zolgensma/gene therapy) but may be able to get access to it via a clinical trial someday via an alternate route (lumbar puncture again) But it would require her being off any treatment for at least 4mo which is scary in itself, and we have no idea if gene therapy would work for her at this age like it does for infants and babies under 2, which is currently what it's approved for.

It's SMA Awareness Month! All of August we will be sharing about SMA and our life with SMA! Follow along 💜
08/01/2024

It's SMA Awareness Month! All of August we will be sharing about SMA and our life with SMA! Follow along 💜

Like mother like daughter 😍
07/25/2024

Like mother like daughter 😍

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Livingston, MT

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