Gunner’s Journey

05/18/2026

FA is not something you simply explain to your child — it becomes a journey you learn to understand together, one day at a time. Be honest with them. Be open with them. Don’t hide the hard moments, because sometimes the very child you are trying to protect will become the source of your greatest strength and courage.

Hold tightly to your faith, always keep God at the center of the journey, and never let go of hope. Even in the hardest seasons, God can provide peace, purpose, and strength beyond what we could ever carry alone. Hope does not mean the road is easy — it means we trust that God walks beside us through every step of it.

How have you explained Friedreich’s ataxia to children in your life? https://bit.ly/3UFQynd

05/17/2026

A little FA knowledge.

05/15/2026

Tomorrow is FA Awareness Day!

It’s a chance to raise awareness for Friedreich’s ataxia and the community working so hard to change what’s possible.

It takes awareness, action, and community to accelerate progress toward treatments and a cure.

Join us. Honor someone you care about with a gift to advance FA research: curefa.org/breakthrough

05/15/2026

Calling all Bryan College Station volunteers! We are looking for open house volunteers for the 2026 St. Jude Dream Home on Saturdays and Sundays through June 7th.

Sign up here today! https://volunteer.stjude.org/custom/515/organization_details/8520

05/14/2026

We are incredibly humbled and grateful to share this special moment with our Gunner’s Journey family. Today, Gunner received a letter from President Donald J. Trump and the First Lady Melania Trump offering prayers, encouragement, and support during his fight. 🇺🇸❤️🙏

As parents, moments like this remind us just how far God’s love can reach. Through every challenge, every setback, and every victory, we continue to see His hand guiding our family and surrounding Gunner with strength, hope, and incredible people from all walks of life.

To everyone who has prayed for Gunner, supported Gunner’s Journey, worn the shield, shared our story, or simply lifted our family up in prayer — thank you from the bottom of our hearts. We truly believe God is using this journey for something far bigger than ourselves.

Gunner continues to fight with courage, faith, and a smile that inspires everyone around him. We are beyond thankful for every prayer spoken over him and every person standing with Gunner’s Army.

And President Trump… you’re not off the hook just yet. 🇺🇸 We are still praying and believing that February 8 will one day be recognized nationwide as Friedrich’s Ataxia Day in honor of Gunner and every family courageously fighting this disease. We will continue to raise awareness, continue to fight, and continue to trust God every step of the way.

May God continue to bless Gunner, bless every family facing battles of their own, and may God bless America.

05/13/2026

Country music cruise raising money for St. Jude Children’s Research Hospital – Texas you say? Might have to give it a try sometime.

05/13/2026

So much love and respect for both FARA and Kyle Bryant.

Title: Exercise combined with nicotinamide riboside improves cardiopulmonary fitness in FA

Exercise has long been recommended for people with FA, and a new study published in The Lancet Neurology (May 2026) now provides clinical evidence supporting that recommendation.

In a 12-week trial at Children’s Hospital of Philadelphia, 66 children and adults with FA were assigned to exercise, nicotinamide riboside (an NAD⁺ precursor supplement), both, or neither. The combination of exercise and nicotinamide riboside resulted in a clinically meaningful improvement in cardiopulmonary fitness. Overall, the interventions, both alone and in combination, were well tolerated.

This study was supported by FARA and the National Institutes of Health and was made possible by the participants and families who contributed to the research. Thank you. And if you’ve been looking for motivation to train for a RideATAXIA event, this study offers a compelling one.

A special congratulations to Kyle Bryant, FARA’s adaptive exercise expert, on his first peer-reviewed scientific publication, and to Jen Farmer for her continued contributions to advancing FA research.

Read the paper at https://ow.ly/enfk50YXOel

Individuals considering any intervention should consult with their physician. FARA does not provide medical advice.

05/08/2026

Hold out hope?
No.
There will be a cure. It’s not an if, it’s when.

Do you still hold hope for a cure for Friedreich’s ataxia? https://bit.ly/3V9Qlca

05/06/2026

Read more here: https://bit.ly/4sKROnB

New research is opening the door to studying some of the rarest forms of Friedreich’s ataxia. Scientists have developed stem cell lines from a patient with an ultra-rare FXN mutation—creating a powerful new tool to better understand the disease and explore more personalized treatment approaches.
This kind of progress brings hope that even the rarest FA cases won’t be left behind in research and future therapies. 💙

05/06/2026

Appointments ongoing at St. Jude Children's Research Hospital. We love this place and the people!