Donation Data For The Year Of 2021
of Children Treated
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
$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
$92,000 to Dr. Sara Mole
$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
$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.
Various $1,000 grants
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.