After being personally touched by Spinal Muscular Atrophy—the No. 1 genetic killer of children under 2 years old —Brett and Tia Ruth wanted to make a difference. Named after their son, the Logan Ruth SMA Foundation began its work in May 2013 to raise awareness and fight for a cure for SMA. As southwest Missouri’s only organization serving families impacted by SMA, the Logan Ruth SMA Foundation provides support for local families and donations for families nationwide.
Why was your organization started?
The Logan Ruth SMA Foundation was founded in honor of our son, Logan. His beautiful spirit changed our lives. Spinal Muscular Atrophy (SMA) is the No. 1 genetic killer of children under the age of 2 and similar to Lou Gehrig’s disease (degenerative muscles disease). It affects 1 in every 6,000 live births. There is currently NO treatment and NO cure…yet!
When we started our journey with Logan, we had nowhere to turn but St. Louis. If it weren’t for social media, we would have never known there were local families with the same diagnosis. We felt alone during those first few months of the diagnosis. Through those times, we developed a passion to see SMA cured and have no family feel alone, like we did.
Whom does your organization serve?
We serve newly diagnosed families in southwest Missouri. We want to make sure these new families have the support system they need to help them on their journey.
We also serve the general public by simply spreading awareness. 1 in 40 people unknowingly carry the gene, which translates to more than 10 million Americans. Carriers of the recessive gene for SMA have no symptoms and aren’t sick. A simple blood or saliva test can determine if you’re an SMA carrier.
What services do you provide?
We connect newly diagnosed families with other supportive SMA families. There are different care routes you can take (palliative, non-invasive, and invasive), and it’s important to have strong support systems.
We have a limited number of Thirty-One Zip-Top Organizing Utility Totes that are given to local SMA families on a first come, first serve basis.
Fundraising events throughout the year help raise funds toward medical research grants to help the fight for a cure.
How does someone obtain services?
We are available through email, text or phone call.
Do you accept volunteers?
Absolutely! We have local events to help spread awareness, and we need local volunteers to help us with those.
What kinds of donations do you need/accept?
We accept volunteer time, support for the families we serve and monetary donations for research grants looking for a cure.
Is this a local chapter of a larger organization or an entirely local group?
This is a completely local, volunteer-run organization.
Through the foundation, we are dedicated to spreading awareness about Spinal Muscular Atrophy, supporting
newly diagnosed families, and to fight for a cure–especially in southwest Missouri!
Logan Ruth SMA Foundation
P.O. Box 113, Strafford, MO 65809
Founders – Brett and Tia Ruth
Board Nembers – Chandler Johnston, Katy Samsel, Taylor Carter