Helping Families with Rare Genetic Disorders
Our son, Landon, was diagnosed with an extremely rare genetic disorder in the Spring of 2018 at the precious age of nearly 2. 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 condition. His disease is so rare, there is no name and no known viable treatments. We started the LandOn A Cure Foundation in 2020 with a 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 know the staggering reality of what “rare” 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.
Research for these patients is critical and urgent, and we are determined to save our son.
The biggest shock, however, is learning that funding does not exist for research and treatment for disorders like Landon’s. If we want to save our son, we have to raise the money ourselves.
As Landon’s life is depending on us, we are hoping to carry the momentum from ESPN College GameDay forward to more media outlets in order to raise awareness and funding.
We genuinely appreciate your help in
LANDING ON A CURE!
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!
Micheal McChesney ~Landon’s father
“We have the potential to change the trajectory of Landon’s diagnosis.”
Jaren McChesney ~ Landon’s mother
“We don't know how TBCD will affect Landon’s development or how long he will live. As all families battling rare disease; we face so many unknowns. Research on Landon’s condition could be life-changing.”