Valor's KAT6K Run/Walk

Event Overview

This will be our 4th year hosting a KAT6 walk/run. Valor was diagnosed at the age of two with KAT6A. It is a rare genetic syndrome that makes his life a little different, but thanks to the KAT6 foundation we have found help, support, community, and hope. Please join us to support and raise awareness for an amazing foundation!!

How You Can Help

• Make a Donation: Directly to the KAT6 Foundation (in honor of Valor) simply click this link https://donate.kat6.org/Valor26
• Note: Neither Valor nor the Sander family receive any portion of these funds, either donations to the foundation or money raised from the run/walk event. Funds donated through the above link do not count towards your run/walk registration.
• Support the Foundation: This is a great way to support the foundation above and beyond the event itself, or a great way to help out if you are not able to come to the event in September.
• Thank You: Thank you for your generous support!

Spread Awareness

• Share the Race: Share this race registration page with friends and family to help us reach more people.
• Increase Attendance: Help increase attendance at the event, increase awareness, and grow support for this important cause.

About the KAT6 Foundation

The KAT6 Foundation is the only nonprofit organization dedicated exclusively to supporting individuals and families affected by KAT6A and KAT6B syndromes worldwide.

Your Support Makes a Difference

• Fund Research: Aim at developing therapies and treatments for KAT6 syndromes.
• Provide Support: Education and connection opportunities for families.
• Offer Grants: Help families access equipment, technology, and therapies.
• Expand Awareness: Grow education within the medical community.

Update on Valor

Valor is now 5 years old. This past year we have seen huge growth in him. We decided to enroll him in a local preschool and though we were nervous, he flourished. Valor comes off as a shy guy, but truly loves people and being with them. Since starting preschool we have seen his speech skills grow tremendously. He was only speaking two words together at a time a year ago. Now we can have little conversations with him and he is often saying entire phrases at once. We are so grateful for his progress and his determination. He works so hard and you can tell he truly wants to learn. It is harder for him to remember things and takes more repetition than most kids, but to see his face light up when he gets one of his letters or numbers right is worth it all. His preschool teachers worked hard with him this year so that he could learn how to write his name. By the end of the year he was able to do it, and it was a huge success for him. We decided to enroll him in another year of preschool this coming year. We believe using his AAC (Augmentative and Alternative Communication) device more this year and continuing to work at school and at home will set him up to succeed even more in the future.

This year we have also seen Valor want to be independent and do everything his big brothers are doing. He loves playing with trains, cars, and making sound effects with his brothers. Valor also enjoys music and snuggling his stuffed animals. His current favorite stuffed animal is "baby owl". He continues to be a bright light to those who know him. His smile is infectious and melts your heart.

Challenges Faced

This past year Valor's biggest struggle has been eating and dealing with some stomach issues. We had to increase his supplements and change medications a few times. We have also had to learn what stomach pain looks like and help him communicate more about how he is feeling, because he will often hurt but say he is fine. We will continue to try and help Valor the best way we can. We are so grateful for all of the support of the community around us!

Looking Forward

This year it has been such a joy to see Valor's speech and independence grow. At one time we didn't know if he would ever be able to say words and anticipated that learning would be a great challenge for him. This past year gave us hope. We are especially grateful for Valor's patient and understanding preschool teachers, for his two amazing and hardworking speech therapists, for his determined and insightful PT and OT therapists, and for the talented and passionate team of doctors that continue to advocate for him.

Join Us

Lastly, we would not be here if it wasn't for the KAT6 foundation. Currently, because of the funding and support of people like you, there are eight research studies underway in the KAT6 community. The KAT6 foundation is truly on their way to find more help for KAT6 kiddos. The knowledge, support, community, and hope that they have given us and our family is a big part why Valor is where he is. That is why we are asking you to join us in Valor's KAT6 walk/run, to support not only Valor, but others like him and those who will come after him.

Event Details

• Date: 2026-09-26
• Location: Pickett's Run Park, Bluffton, IN
• Registration Link: Valor's KAT6K Run/Walk
• More Information: To learn more, visit kat6.org.