Helping Families with Rare Genetic Disorders
At the precious age of 2, our son, Landon, was diagnosed with an extremely rare genetic disorder in the Spring of 2018.
Landon’s disease is progressive and degenerative, affecting his ability to walk and talk.
This devastating disease is caused by a mutation in his TBCD gene. He is one of approximately 50 living people with this ultra-rare genetic disorder.
His disease is so rare that there is no name and there are no known viable treatments.
We started the LandOn A Cure Foundation in 2020 with one goal:
To expand TBCD medical research and find a cure.
By first understanding how the disease works in the body, we can begin to figure out how to:
1) Stop disease progression, and
2) Develop a treatment for TBCD
There is little news coverage or awareness about rare diseases.
Few people experience the staggering reality of what “rare disease” really means. Unlike cancer or hypertension, when you get a rare disease diagnosis, you don’t walk out of the doctor’s office with a treatment plan or even a pamphlet.
The doctor knows about as much as you do at that moment.
The biggest shock of learning about our son’s condition was the realization that there is no research or treatment for his disease.
If we want to save our son, we have to do raise awareness and money for lifesaving treatments.
Landon and other patients struggling with rare diseases deserve the critical and urgent research that will allow them to live long and full lives.
We want to carry the momentum from our life-changing ESPN College GameDay to more media outlets to raise awareness and funding.
We are determined to save our son.
We genuinely appreciate your help as we work to
LandOn a CURE!
“We have the potential to change the trajectory of Landon’s diagnosis.”
-Michael McChesney, Landon’s Father
What your donation means to us…
Our mission is to raise awareness and further medical research focused on rare genetic disorders like TBCD.
With your contribution, we hope to help Landon and other families affected by similar diseases.
Landon is the only child living in the United States with his specific mutation and condition. We have connected with a small group of families with similar diagnoses, all trying to find answers while providing daily intervention to help their children reach milestones.
Some milestones take years, some may never come.
Our goal is to propel medical research in the direction of a cure.
With your help, we will Land On A Cure!
“We don't know how TBCD will affect our son’s development or how long he will live.
As all families battling rare diseases, we face so many unknowns.
Research on Landon’s condition could be life-changing. Not just for him, but for all patients battling rare disease.”
- Jaren McChesney, Landon’s Mother