Venture Philanthropy in the News
A Silicon Valley entrepreneur who has led startups in areas as diverse as food processing and simulated helicopter flights, Johnson founded the Myelin Repair Foundation in 2002 with the goal of halving the time it takes to develop new MS treatments. Now he's part of a growing movement to fix the messy, uncoordinated way new medicines are created. "The challenge in medical research is that there ultimately is no one in charge," says Margaret Anderson, executive director of FasterCures, a Washington nonprofit trying to speed up medical breakthroughs. Change can't come fast enough for those with intractable diseases. Chicago businessman Robert Rosen started the MPN Research Foundation to fund research for the family of blood cancers known as myeloproliferative neoplasms after he was diagnosed 15 years ago.
By mobilizing $75 million of its own money, its network of researchers, its network of patients, and its own organizational moxie, the Cystic Fibrosis Foundation helped to create a new drug that profit-motivated investors never would have supported... Nobody has a better handle on this growing trend than the Washington, D.C.-based advocacy group FasterCures... The Michael J. Fox Foundation for Parkinson's Research, the Multiple Myeloma Research Foundation, the CHDI Foundation, the Leukemia & Lymphoma Society, Accelerate Brain Cancer Cure, the National MS Society, and the Juvenile Diabetes Research Foundation are a few of the foundations that mean business when they talk about "venture philanthropy..." In one example, Accelerate Brain Cancer Cure recently put $175,000 into Cambridge, MA-based Agios Pharmaceuticals to run experiments on whether drug for a cancer metabolism pathway might be useful for brain cancer... I saw the passion and purpose on display a couple years ago at a conference when Josh Sommer of the Chordoma Foundation implored a group of researchers to get cracking on new pathways, on collaborations, on new drug candidates.
Together the trio - Debra and Leon Black and Mike Milken - founded the Melanoma Research Alliance under the auspices of the Milken Institute. Before long, they were funding established doctors, young scientists, and interdisciplinary teams, but they had two strict stipulations: Researchers had to demonstrate that their work would be clinic-ready within a few years, and they had to agree to share their findings. The Blacks envisioned themselves as venture philanthropists.
Kathy Giusti discusses personalized medicine in the U.S. and abroad.
The Wall Street Journal
A growing number of patient-advocacy groups are playing matchmaker, linking patients to researchers who need them for clinical trials. The Michael J. Fox Foundation for Parkinson's Research on Tuesday is formally launching the Fox Trial Finder for patients with the disease, which the actor was diagnosed with in 1991 and affects about one million Americans. The Alzheimer's Association and JDRF, a Type 1 diabetes group formerly known as the Juvenile Diabetes Research Foundation, have launched matching sites, too.
It was once only drug firms that developed drugs. But this is changing. Take the case of the Michael J. Fox Foundation, a Parkinson's disease charity. On April 19 it announced that it would pay for a clinical trial of a drug developed by Sanofi, a French pharmaceutical giant, that might treat the mental symptoms of the disease. Charities have been particularly bold. The leading "venture philanthropist" is the Cystic Fibrosis Foundation.
In some ways, the Myelin Repair Foundation functions like a contract research organization for multiple sclerosis, capable of validating and robustifying preclinical assays, and developing and analyzing potential biomarkers for use in clinical studies. MRF, like other disease research foundations, are impassioned and mission-oriented - their mindset isn't the rational, corporate, "should we do this? Let's make a decision analysis chart!" but rather, tends to be much more the sort of thing you hear from entrepreneurs - "we will do this - and will kick through walls if necessary to succeed."
The Boston Globe
It would have been hard to imagine that any good could ever follow that Sunday afternoon at Massachusetts General Hospital when years had dwindled to months and months had given way to minutes and Joe and Kathy O'Donnell held their only child, Joey, while he shut his eyes, drew a final, quiet breath, and died. Some parents would have been defined by this loss, understandably so.
The Chronicle of Philanthropy
As the explosion in biomedical research increases the potential to cure a wide range of diseases, a growing number of private foundations and other charities now provide money to nonprofits for converting scientific discoveries into patient therapies. The National Institutes of Health is also expanding its support for applied medical research by investing $700-million a year in a new center dedicated to this purpose.
Wall Street Journal Health Blog
The effort by two families to buy and develop a drug that holds promise in treating Duchenne muscular dystrophy is the result of an innovative new model set up to support the burgeoning phenomenon of do-it-yourself drug development. Before the Seckler and Wicka families bought halofuginone, a drug that showed promise in experiments done with Duchenne mice, they set up Dart Therapeutics.
In 2001, Goldman Sachs Group partner Dinakar Singh learned that his 19-month-old daughter, Arya, had a crippling genetic disease called spinal muscular atrophy. There are no treatments, let alone a cure, Bloomberg Markets magazine reports in its October issue.
The Wall Street Journal
Like many people with rare diseases, Katherine Leon set out to connect via an online network with other SCAD survivors, one as far away as New Zealand. What distinguishes this group of patients, however, is that they succeeded in persuading researchers at a major medical center to launch a research program to learn more about SCAD.
When the Maryland-based Cystic Fibrosis Foundation invested in Californian biotechnology company Aurora Biosciences in 2000, it launched a revolution. Before then, it was taboo for a biomedical charity to take a stake in a commercial firm; instead, foundations usually sent their money to academic labs.
The stars of the venture-charity model include MMRF and ABC2 (Accelerate Brain Cancer Cure), started by AOL founder Steve Case and his family, which posits that a "nimble, focused and entrepreneurial model" will make advances against a cancer that has a poor long-term survival rate. The Melanoma Research Alliance, started by Wall Street mogul Leon Black and his wife Debra, is now the largest nongovernment funder of melanoma research.
The New York Times
Today, I'm focusing on an organization called the Myelin Repair Foundation that is working to accelerate the development of a novel treatment for multiple sclerosis, a disease that affects 400,000 Americans. It is one of several foundations — others include the Michael J. Fox Foundation for Parkinson's Research, the Cure Alzheimer's Fund, the Cystic Fibrosis Foundation and the Prostate Cancer Foundation — whose approach departs from the standard model employed by the National Institutes of Health and major medical foundations. These groups are intensely goal-directed and collaborative; they see the creation of new cures as a process that needs to be managed; and they bring a sense of urgency to the task.
Boston Business Journal
Vertex Pharmaceuticals has entered into a collaboration with Cystic Fibrosis Foundation worth up to $75 million, to develop drugs to fight the most common form of the disease. The new phase of the partnership will focus on the discovery and development of new medicines known as correctors that aim to treat the underlying cause of cystic fibrosis.
The Boston Globe
Patients suffering from chronic conditions are playing an active role in healthcare by sharing medical information and other insights through Web sites, said attendees at the Massachusetts Biotechnology Council's annual meeting. Patient advocacy groups are becoming more involved in drug development by funding research projects for new treatments and collaborating with biotech and pharmaceutical firms, said Deborah Dunsire, Millennium Pharmaceuticals' CEO.
The Chronicle of Philanthropy
Started in 2003 by Michael Milken as part of the Milken Institute, an economic think tank in Santa Monica, Calif.,FasterCures encourages philanthropists to take bigger risks when supporting research in the name of people who don’t have the time to wait for new treatments to drip from the research pipeline. In starting FasterCures, he expanded on his approach with the Prostate Cancer Foundation to support research on a roster of diseases that affect more than 100 million Americans, including Alzheimer’s, cancer, and Parkinson’s.
Knowledge @ Wharton
A new model for developing cures is winning battles in the war against disease in laboratories, clinics and research centers around the world. The hallmarks of this movement are collaboration and the sharing of intellectual property in a wide-open manner that cuts against the grain of traditional for-profit drug discovery.
As the engine of drug development stalls, disease-focused charities - including Juvenile Diabetes Research Foundation, Multiple Myeloma Research Foundation, the Cystic Fibrosis Foundation, the National Multiple Sclerosis Society, CHDI Foundation, Michael J Fox Foundation for Parkinson's Research, and The Leukemia & Lymphoma Society - are stepping up to restart the engine by becoming the new financiers of early-stage drug development.
Institute of OneWorld Health, the first nonprofit pharmaceutical company in the United States, realizes surprising results when drug development and altruism collide.
The New Yorker
Pat Furlong, a nurse from Middletown, Ohio, learned in the 1980s that her two young sons had Duchenne Muscular Dystrophy. Furlong, at 64, has been singularly effective as a patient activist, not only in spurring research toward a cure for the disease but in working with doctors and drug companies to improve care.
In the field of medical research, private philanthropy is a relatively small player. But private philanthropy still has one crucial advantage. Private donors do not answer to voters or shareholders, and they are not constrained by the peer-review protocols that dominate government funding. They are free to innovate, to experiment, to take risks, and to find and occupy their own distinctive niche.
If you are told you have an incurable disease, you might be motivated to help find a cure.