irs program accomplishments · form 990 part iii · fy2019
What they reported doing
- #1 primary $0RAISE AWARENESS AND FUNDRAISING TO FIND A CURE FOR THIS DEBVILITATING DISEASE. THE FUNDS RAISED BY THE ORGANIZATION ARE DONATED TO ROWAN UNIVERSITY, SCHOOL OF OSTEOPATHIC MEDICINE LOCATED IN STRATFORD, NJ TO SUPPORT THE TREATMENT AND RESEARCH OF CANAVAN DISEASE. THE ORGANIZATION HAS RESEARCHED AND VISITED THE SCHOOL, AND HAS DONE ITS DUE DILIGENCE IN TERMS OF REVIEWING THE SCHOOL'S ABILITY TO HELP THE ORGANIZATION FULFILL ITS MISSION. THE ORGANIZATION WILL, IN FUTURE YEARS, WORK WITH ADDITIONAL UNIVERSITIES AND MEDICAL FACILITIES AS THEY ARE IDENTIFIED AND FOUND TO HAVE RELEVANT AND REPUTABLE MEDICAL PROGRAMS, AND THOSE FACILITIES WILL BE CONSIDERED FOR FUNDING AS THE ORGANIZATION GROWS AND HAS INCREASED REVENUE.
named programs · 1 · from sources
What they call their work
Canavan Disease Research Funding
Directs donated funds to support gene therapy research at Rowan University School of Osteopathic Medicine, focused on developing a cure for Canavan disease
activities · 2 groups
What they do
-
Rare Genetic Disease Research and Advocacy 2 activities
- Providing informational resources about Canavan diseaseOffers educational materials and resources detailing the symptoms, onset, and progression of Canavan disease to support affected families and promote awareness.
- Supporting collaborative gene therapy and cure development research for Canavan diseaseSupports and collaborates with leading scientists to advance gene therapy research and develop a cure for Canavan disease, a rare inherited brain disorder that impairs motor function and leads to early death in children.
-
-
Genetic and Neurological Disease Research Funding 1 activity
- Funding research and treatment of Canavan disease at Rowan UniversityFunds research and treatment initiatives for Canavan disease at Rowan University, School of Osteopathic Medicine, supporting scientific efforts toward a cure. This includes gene therapy research aimed at increasing enzyme function in targeted brain cells.
-
financials · form 990 · fy2019
revenue
Total revenue$195K
Contributions & grants$195K100%
Program service revenue$00%
Investment income$00%
Other revenue$0
expenses
Total expenses$24K
Program expenses94%
Admin / overhead0%
Fundraising5%
Salaries & benefits$0
Grants paid out$0
Largest expense lineOther
balance sheet
Total assets$172K
Cash$172K
Investments$0
Liabilities$604
Net assets$171K
Liquid reserves85.2 mo
1 years on record · 2019–2019
leadership · form 990 part vii · fy2019
Who runs it
board members · 1
- JOSHUA SCHANZER — DIRECTOR
relationships · 5
Who they work with
- CIS Solutions Partner — Designed the Cure Canavan Fund website
- Dayton Children's Partner — Partnered with Dayton Children's for the first world trial of a new gene therapy for Canavan disease.
- Rowan School of Osteopathic Medicine Partner — Collaborates with the Cell and Gene Therapy Center at Rowan School of Osteopathic Medicine on gene therapy research for Canavan disease.
- Rowan University Partner — Collaborates with Rowan University's Cell and Gene Therapy Center in the development of treatments for Canavan disease.
- Rowan University, School of Osteopathic Medicine Partner — Receives donated funds from the organization to support treatment and research of Canavan disease.
strategies · 4
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Cross-Disease Neurodegenerative Impact 320 orgsmethodology: cross-disease_therapeutic_developmentBy developing a cure for Canavan disease, we generate knowledge and therapeutic platforms that can be applied to other neurodegenerative disorders, because Canavan serves as a model leukodystrophy with shared pathways.shared approach: Venture Philanthropy Model →
- Gene Therapy for Enzyme Restoration 320 orgsmethodology: gene_therapy_for_enzyme_restorationBy restoring enzyme function via gene therapy in brain cells, we aim to improve motor development and achieve a cure for Canavan disease, because the disease is caused by a deficiency in the ASPA enzyme leading to toxic buildup in the brain.shared approach: Venture Philanthropy Model →
- Research-Driven Cure Development 320 orgsmethodology: research-driven_cure_developmentBy funding and advancing targeted scientific research, we accelerate the development of a cure for Canavan disease, because understanding the neurological and genetic mechanisms is essential to creating effective therapies.shared approach: Venture Philanthropy Model →
- Genetic and Metabolic Education as Intervention Foundation 36 orgsmethodology: genetic-educationBy educating stakeholders about the genetic and metabolic basis of Canavan disease, we build informed communities and support early intervention, because understanding inheritance patterns and biochemical pathways enables prevention and timely research engagement.shared approach: Research-Advocacy Integration →