Wylder Nation Foundation

Our Inspiration

During the process of trying to save our son’s life from Niemann-Pick Disease Type A, a rare and fatal Lysosomal Storage Disorder, we were faced with many different challenges.  The one challenge we were never able to overcome was finding a treatment option for such a rare and unknown disease. 

In July 2012, our 3-year-old son Wylder’s time here on earth came to an end, but he left behind lessons of unconditional love and the power of hope.  He also provided us with perspective on how to make a lasting impact on the world by paving they way to help others.

As part of a promise made to our WARRIOR, we formed the Wylder Nation Foundation.  We are taking the lessons learned from his beautiful life and using them as a catalyst for positive change to provide hope in the form of treatment options for other children fighting for their lives.

We invite you to join us in living like a WARRIOR by fighting the fight, standing strong, loving unconditionally, and contributing to this important cause. Together we will succeed in the fight against Lysosomal Storage Disorders.

 With Hope Always,

 Steven & Shannon Laffoon

 

 

Lysosomal Storage Disorders (LSDs)

Lysosomal Storage Disorders are a group of genetic diseases that result when a particular enzyme exists in too small of an amount or is missing altogether, causing a buildup of toxic substances in the body’s cells.  This buildup damages organs, eventually causing major organ systems to fail.

 

Facts:

• Individually, Lysosomal Storage Disorders are extremely rare, but combined they effect roughly 1 in 7000 children.
• There are more than 50 identified LSDs, most of which have no treatment options and are fatal by early childhood.
• Every 30 minutes a child is diagnosed with a Lysosomal Storage Disorder. Most won’t live to see their fifth birthday.
• Currently there are no cures for these devastating diseases, and only six LSDs have an FDA-approved treatment.

 

Current Problem:

• Life-saving science already exists, but is stuck in the “translational gap,” also known as the “Valley of Death.” Most discoveries are held up and lost due to the current broken system.
• Lysosomal Storage Disorders are extremely rare and very complicated to treat, resulting in little attention from an industry typically looking to develop the next "blockbuster drug."  Therefore, minimal funding is designated for these disorders resulting in very few treatment options.
• Currently it takes 12-15 years and more than $1 billion to develop a single treatment. Nine out of 10 potential treatments never make it to a patient due to an extremely outdated and inefficient process.
• Lack of communication and sharing of important data often results in duplicated experiments, ultimately increasing the cost and amount of time it takes to develop new treatments.

 

Wylder Nation’s Innovative Approach

• We seek to use scientific discoveries that already exist for Lysosomal Storage Disorders and work diligently to translate them into treatments for the children that need them most.
• We serve as the hub for every project and manage the entire translational process to ensure the most efficient and cost-effective development of potential life-saving treatments for children.
• By collaborating and partnering with all relevant sectors including, but not limited to, academia and industry, we can drastically reduce the amount of time and cost to develop a treatment.
• Important information and data is shared with all qualified collaborators and partners across the Wylder Nation collaborative platform.