Our mission is to increase awareness of SPG4 Hereditary Spastic Paraplegia, provide a resource for patients and their families, and fund research to find a cure for SPG4 Hereditary Spastic Paraplegia.
Cure SPG4 Foundation centers its grantmaking on SPG4 Hereditary Spastic Paraplegia, with research support aimed at a cure, plus a patient-and-family resource mission tied to awareness of the condition. Its recent funding shows a narrow scientific focus rather than broad issue-area philanthropy: the largest 2024 grant went to Drexel University for SPG4 gene therapy, and another major award supported Northwestern University’s NU-9 in vitro studies. The foundation also backs research infrastructure that can move the field forward, including a biobank built with The Coriell Institute and patient-derived stem cell models. Across its program list, the work is consistently preclinical and translational, with projects spanning gene therapy, small-molecule evaluation, antibody development, and biomarker-related research. That pattern suggests a funder organized around moving SPG4 science from sample collection and model building toward treatment development. The foundation’s grants are directed to research teams and institutions rather than individuals, and its activities include both project-specific awards and shared research resources that other scientists can use.
In gene therapy, Cure SPG4 Foundation backed Drexel University’s SPG4 Gene Therapy project and also funds AAV9 gene therapy work with UMass Chan Medical School and Drexel University. For small-molecule development, it supported Northwestern University’s NU-9 in vitro studies and maintains an AKV9 (NU-9) preclinical research line focused on upper motor neuron health. The foundation also funds model-building work through SPG4 patient-derived stem cell models, including skin fibroblasts converted into iPSCs for research use. Another strand of its grantmaking supports the M1 antibody program, including antibody development tied to the M1 spastin protein as a biomarker and therapeutic tool. These projects all sit within SPG4-focused preclinical and translational research.
The foundation’s typical grant size is tightly clustered: p25 is $43,250, median is $46,500, and p75 is $60,750. The 2024 grants listed are all made to U.S. recipients, and the recent record shows repeated support for research institutions rather than individuals. Its structure is project-based and research-directed, with funding flowing to specific studies, labs, and shared resources. Some programs accept unsolicited requests, including the SPG4 biobank and natural history studies, while several project lines are invitation- or collaboration-based. The foundation does not make program-related investments and does not fund individuals.
$162K
$132K
$101K
$112K
Most grants fall between $43K and $61K, with a median of $47K.
25th Percentile
$43K
Median
$47K
75th Percentile
$61K
About 0% of grants go to recipients in IL.
Erin Dear
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Grant activity is regionally concentrated in the United States, with all listed recent grants going to U.S. recipients. By count, Pennsylvania is the top giving state, reflecting the foundation’s strongest recipient concentration there. Recent awards reached Philadelphia and other research hubs, including Chicago and Worcester. The recipient-country distribution is entirely domestic in the data provided, even though some program descriptions note international research use for shared resources.
Its funding is centered on SPG4 Hereditary Spastic Paraplegia research, especially gene therapy, preclinical studies, biomarker development, antibody development, biobanking, and patient-derived cellular models. Named programs include AAV9 gene therapy, AKV9/NU-9 preclinical work, SPG4 biobanking, and M1 antibody development.
No. The foundation’s grantmaking is directed to research teams, laboratories, universities, and research institutions rather than individuals.
The middle of the distribution is fairly tight: p25 is $43,250, the median is $46,500, and p75 is $60,750. The recent grants shown also include a $75,000 award and a $40,000 award.
Some programs accept unsolicited requests, including the SPG4 biobank and natural history studies. Other project lines, such as AKV9/NU-9 and several lab-specific research projects, are collaboration-based and do not accept unsolicited requests.
The clearest areas are SPG4 gene therapy, small-molecule therapeutic development, antibody-based research, patient-derived stem cell modeling, and biobanking. Those themes appear across the foundation’s active programs and its recent awards to research institutions.
2025
Source: IRS Form 990-PF, fiscal year 2025.
Current and upcoming funding from Cure Spg4 Foundation that your nonprofit may be able to apply for.
Who can apply: Donor eligibility: SPG4 children and adults, and unaffected parents and siblings. Researcher access: researchers may request access to cell lines via Coriell's services.
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Most recent grants reported to the IRS.
| Recipient | Location | Amount | Year | Purpose |
|---|---|---|---|---|
| Drexel University | Philadelphia, PA | $75,000 | 2024 | SPG4 Gene Therapy |
| Northwestern University | Chicago, IL | $46,500 | 2024 | NU-9 in vitro studies |
| UMass Medical School Foundati | Worcester, MA | $40,000 | 2024 | Carrier Cattle - SPG4 Gene Therapy |
UMass Medical School Foundati
$40,000Carrier Cattle - SPG4 Gene Therapy
