Genome - 7 Nonprofit Groups Using the Venture Philanthropy Model To Help Fund Drug Development

1. Cystic Fibrosis Foundation
In almost all discussions of venture philanthropy, the Cystic Fibrosis Foundation is upheld as the organization that pioneered the model for rare diseases and has been most successful with it. Its drug development model aims to reduce the financial risk of early-stage drug development of targeted treatments by working with pharmaceutical companies and reinvesting the resulting funds into further research. The discovery and approval of Kalydeco, which treats a root cause of the disease, was a major milestone, and the science behind it has unlocked new research and development that may eventually lead to a cure for cystic fibrosis.

2. Michael J. Fox Foundation
Michael J. Fox established his namesake foundation with the goal of developing better treatments and finding a cure for Parkinson’s disease. As part of its efforts, the organization has invested $100 million in funding nearly 225 pharmaceutical-industry projects. As with many other organizations, the Michael J. Fox Foundation’s pharmaceutical partnerships are part of a nuanced approach that offers funding, research tools, networking, and recruitment assistance for clinical trials.

3. Multiple Myeloma Research Foundation
As part of a widespread approach, the Multiple Myeloma Research Foundation partners with the pharmaceutical and biotech industries to develop new treatments. The organization funds early-stage development, which is often a prohibitively expensive step in pursuing targeted disease treatments. The MMRF Biotech Investment Awards program began in 2006 and has committed $11 million to biotech research and development. Research funded by the MMRF resulted in several new treatments, with more than 20 others in various stages of clinical trials in the development pipeline.

4. JDRF
JDRF, the leading global organization funding type 1 diabetes research, focuses on translating research into therapies that will improve lives and eventually cure type 1 diabetes. With an approach that includes partnering with pharmaceutical companies, the goal is to “decrease barriers to commercial development.” The organization pursues this goal through key partnerships with “the academic sector, NIH [National Institutes of Health], other funders and foundations, industry, investors, regulatory agencies, and healthcare payers” to deliver treatment breakthroughs to patients.

5. Leukemia & Lymphoma Society
The Leukemia & Lymphoma Society partners with several organizations, including Onconova Therapeutics, Celator Pharmaceuticals, and Acetylon Pharmaceuticals, to expedite the drug-development process. The organization’s Therapy Acceleration Program, launched in 2007, funds initiatives with potential to change and accelerate the standard care for patients with blood cancer. The program aims to shepherd therapies from discovery to clinical testing to increase the likelihood of a beneficial treatment reaching the market. Through its partnership with Onconova, LLS funded a phase 3 clinical trial for patients with relapsed or refractory myelodysplastic syndrome, a type of blood cancer. This marks the organization’s first “approval-track clinical trial.”

6. Alzheimer’s Drug Discovery Foundation
The Alzheimer’s Drug Discovery Foundation (ADDF) is a biomedical venture philanthropy nonprofit aimed at developing treatments, and eventually a cure, through a diverse portfolio of programs. The ADDF focuses its funding on early-stage research and clinical trials to reduce the financial barriers that prevent promising medications from reaching the public. Many of its grants are structured as investments; the returns are then directed toward new research. The ADDF partners with Merck, Pfizer, and others. It funded early research for what became Amyvid, a diagnostic test for Alzheimer’s disease that was approved by the FDA in 2012.

7. Autism Speaks
Autism Speaks advocates for autistic individuals and funds research to further understand the condition and develop treatments that could lead to a cure. In 2012, it launched Delivering Scientific Innovation for Autism (DELSIA), an independent nonprofit affiliate. DELSIA works with for-profit organizations, including biotech companies, to expedite the development of treatments, devices, diagnostic tools, and other products. As with many venture philanthropic arrangements, its partnerships include profit-sharing arrangements for successful products, and any returns are directed toward further research and development. DELSIA is an additional approach to the scientific research already funded by Autism Speaks. It aims to convert laboratory research into practical applications for those with autism spectrum disorder.