Our Story

The Children’s Brain Diseases Foundation (​501c3)

With a rich history in medicine, Dean Rider is the sixth generation of medical doctors in his family.
Going all the way back to the Civil War, the Rider family has been dedicated to the science of medicine and they bring that to their mission of fighting Batten disease.

The foundations beginning started after learning in 1968 that the Rider’s second son Charles (Chucky) had the disease and them feeling helpless and unable to get him the treatment he needed.

In 1978, J. Alfred Rider MD,Phd and his wife Gracelynn Rider decided to start the Children’s Brain Diseases Foundation because there was no funding available to study this disease from the National Institute of Health (NIH). They had 3 main objectives in mind:

Develop a blood test to diagnose Batten disease.
Create a network of Doctors and Scientists that could be educated on Batten disease.
Look for answers in the cause and the cure of Batten disease.
Starting with just 18 medical science experts at the first Batten disease convention in 1980, by 2019 that number had grown to over 600.

This is much to do with the Rider family and their involvement in starting the foundation understanding the causes of this horrific disease and their determination to look for answers.

Dean Rider, MD, along with two family board members (Dean Rider III and Richard Rider) are now at the forefront of the important research being done to fight children’s brain diseases. Each year they grant $600,000 to charities and scientific institutions that are at the forefront and doing leading-edge research against batten disease.

The Children’s Brain Diseases Foundation is proud of how far they’ve come in the fight against Batten disease. Some of the initiatives they’ve sponsored are:

Starting the 1st Neurogenetic Lab at the University of Chicago.
A revolving mice colony dedicated to the testing and study of Battens disease.
Sponsoring the Batten disease yearly conference.
Funding research labs that are making headway in conquering the disease.
The Children’s Brain Diseases Foundation recognizes there is a long way to go. The Foundation is constantly looking for groups that are doing important research and need help in reaching their goals to eradicate Battens and Children’s Brains diseases once and for all.

At The Children’s Brain Disease Foundation, we strongly support all efforts against Batten disease. Established in 1968, the foundation promotes public understanding of this and other related childhood brain diseases and provides research monies to outstanding scientists to investigate the cause of Batten disease and to develop a definitive treatment.

Support is needed now to:

• Maintain the momentum of research on Batten disease.
• Accept the challenge of early diagnosis, effective treatment and prevention