Donation Data For The Year Of 2021


of Children Treated

~ 600k

Raised Every Year


of Dollars Raised Total

In 2021, CBDF gave out $550,000.00 in grants.

In 2020, CBDF donated over $500,000 towards Children’s Batten Disease research.

2021was a very productive and rewarding year for CBDF. The opportunity to be such an important factor in exciting research for conditions with neurologic involvement was special. Last year CBDF also funded several community health outreach programs benefiting children and teens. CBDF looks forward to following the success and programs of the recipients of our grants.

CBDF remains committed to funding research in Batten’s Disease directly and to those areas of research that will benefit the research in Batten’s. In 2021 CBDF granted:

$25,000 to BDSRA

This organization sponsors annual meetings of those doing research in Batten’s.

$105,000 to Dr. Jonathan Cooper’s Lab

Dr. Cooper is at the forefront of research in Batten’s Disease. His research is involved with understanding enzyme deficiency in Batten’s and ways to potentially replace it.

$50,000 Institute for Vision Research

This research center at the University of Iowa is involved in understanding how those with Batten’s become blind and ways to prevent it.

$25,000 to Dr. Amy Brewster

Dr. Brewster’s research involves the role of complement C3 in the pathology of intractable epilepsy in Batten’s Disease.

$67,500 to St. Mary’s Medical Center

These funds were used to improve patient outcomes with neurologic conditions and other associated diseases.

$92,000 to Dr. Sara Mole

Dr. Mole’s research in Batten’s Disease has been supported by CBDF for many years. Her research has led to a better understanding of the disease process and potential ways to treat and cure.

$50,000 to mental health of SMU, and $20,000 to NAMI in Marin County

These two entities have done much to address teen suicide and develop programs aimed at prevention. Covid caused a significant increase in teen suicides and attempted suicides. CBDF felt that helping to sponsor these two worthy programs at this time was appropriate and indicated.

$20,000 to the Lucy Packard Children’s Hospital

This grant went to support a mobile clinic that reaches out to the underserved communities to give medical care. They also will identify those with neurologic issues and assist them in getting appropriate care.

$50,000 to Dr. John Wise

Dr. Wise is doing research on ways to penetrate the blood brain barrier. Being able to penetrate the blood brain barrier will enable effective treatment of all neurologic storage diseases, which of course includes Batten’s.

$25,000 to Dr, Zhihao Wu

Dr. Wu is doing research on the dysfunctional lysosomal functions in the cells of those with Batten’s.


to support materials for the research in Batten’s being done at SMU.

Various $1,000 grants

were made to University Student Health Clinics.

Finally, over the years CBDF has contributed over $2,500,000 to the University of Chicago. Of those funds, approximately $1,200,000 is in an endowment. The income from the endowment is to be used specifically for the research of Batten’s at the University of Chicago. Last year approximately $60,000 went to the research lab of Dr. Nancy Schwartz. Part of the funds has been used to continue support of a mice colony that has Batten’s Disease. This colony is unique and very important to understanding the mechanisms of the blood brain barrier.

In Summary 2021 has seen a major shift in funding practices of CBDF. Prior to 2021, we were doing the bulk of our granting, $350,000 or more to the University of Chicago. In changing our grant program in 2021 we are able to have a much greater impact on so many others. This experience has impressed the Board so we will continue with making various grants of smaller amounts so that we can benefit many more.

That said, doing the homework of sorting thru many worthy research projects has been a challenge. I am not sure that I could have done all this without the daily help from Susan Steel and Erica Grant. Plus, the advice and consultation from the other Board Members, Dean Rider III and Richard Rider as well as numerous Physicians, some of which were kind enough to come to our annual retreats or quarterly meetings.

Dean Rider, MD

President CBDF