Batten Disease Support and Research Association
A family founded organization that turns the experience of a rare fatal childhood disease into funded research, caregiver support, and legislative advocacy across North America
Financial profile
Batten Disease Support and Research Association · EIN 91-1397792 · 501(c)(3)
| Fiscal year | Total revenue | Contributions | Program services | Total expenses | Net assets | Year end |
|---|---|---|---|---|---|---|
| FY2023 | $746,147 | $724,656 | $0 | $952,036 | $1,120,268 | Dec 2023 |
| FY2022 | $1,099,485 | $1,064,250 | $6,000 | $858,302 | $1,273,582 | Dec 2022 |
| FY2021 | $875,074 | $811,390 | $18,200 | $668,937 | $1,155,261 | Dec 2021 |
| FY2020 | $1,228,607 | $968,030 | $236,958 | $718,019 | $949,124 | Dec 2020 |
| FY2019 | $953,611 | $883,058 | $0 | $749,007 | $458,657 | Dec 2019 |
| FY2017 | $834,187 | $834,109 | $0 | $948,857 | $253,334 | Dec 2017 |
Figures exactly as reported. A blank cell was blank on the form. The fiscal year links to the filing.
Peer societies
Five societies Batten Disease Support and Research Association is read alongside.
FSARA
Friedreich's Ataxia Research Alliance
A patient-founded nonprofit dedicated to curing Friedreich's ataxia by funding peer-reviewed research…
31 companies named
BSF
Barth Syndrome Foundation
A values driven St. Petersburg chamber that aims to be the preeminent leader of business while advocating…
4 companies named
DSF
Dravet Syndrome Foundation
A foundation that aggressively raises funds for Dravet syndrome and related epilepsies, funding research…
6 companies named
MSF
Moebius Syndrome Foundation
A rare disease foundation founded in 1994 that serves the Moebius syndrome community with connection…
CFGSD
Childrens Fund for Glycogen Storage Disease Research
A wholly volunteer, family founded fund that channels community fundraising into research and gene therapy…
Who backs BDSRA
No public supporter list found as of September 2026.
Who backs Batten Disease Support and Research Association's peers, but not Batten Disease Support and Research Association
Companies named publicly by at least one of Batten Disease Support and Research Association's five peer societies, and not found in Batten Disease Support and Research Association's reviewed public records.
The outside view
A family founded organization that turns the experience of a rare fatal childhood disease into funded research, caregiver support, and legislative advocacy across North America
- Consensus
- Build
- Outward
- Operational
Their shape
The Movement
Gathered around a cause, and built to move.
The Movement is mission-led and built to mobilize, organized around changing something in the world. Its gift is passion and external impact, its challenge is turning momentum into something that lasts.
Also reads toward The Village and The Republic.
Strengths
Not an official page of Batten Disease Support and Research Association. Sociogene does not consult. Everything here comes from public sources, dated and linked. Something wrong here? Tell us what we missed.