Organizations Filed Purposes:
The Firefly Fund Neurodegenerative diseases affect children many different ways, but their families share a common and grave reality. These children typically die before the age of 20. Today, the Firefly Fund is focused on Neimann-Pick Type C (NPC), also referred to as Childhood Alzheimer's. NPC results in the buildup of cholesterol in the brain, liver, and spleen, leading to progressive neurodegeneration and organ damage. Currently, there are no FDA approved therapies to treat NPC and there is no cure.
To fund and support reasearch and education to acclerate a cure for rare and fatal neurodegenerative genetic diseases that affect children.
Newborn Screening - Since 2017 Firefly has been leading the NPC NBS Initiative with a vision that all newborns will be screened for NPC, enabling early diagnosis and intervention. The Initiative is led by a broad stakeholder working group, chaired by Drs. Elizabeth Berry-Kravis of RUSH and Dr. Marc Patterson of Mayo Clinic, which includes NPC community and industry stakeholders. Twenty nine (29) NPC and NBS expert clinicians from around the US and Canada make up the NPC NBS Clinical Roundtable serving the Initiative as advisors.
Medical Research - Supporting research that could provide novel therapeutics for the treatment of Niemann Pick Type C Disease.
Patient Access Fund - Firefly Fund works with Academic Centers of Excellence and Patient Advocacy organizations to remove barriers to care and access to therapies necessary for their loved ones with an NPC diagnosis.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Mariben Ramsey | President | 5 | $0 |
| Amy White | Board of Directors | 5 | $0 |
| Augustine Park | Director | 5 | $0 |
| Ben Machielse | Board of Directors | 5 | $0 |
| Marianne Dwight | Board of Directors | 5 | $0 |
| Beryl Crowley | Director | 5 | $0 |
| Chris Andrews | Board of Directors | 5 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202033099349302713_public.xml