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The Wall Street Journal: Services Match Patients With Clinical Trials
April 23, 2012
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.
The Economist: All together now
April 21, 2012
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.
The Atlantic: Mission Critical: How Translation-Focused Disease Foundations May Save Medical Research
April 20, 2012
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."
Fox News: Myeloma survivor asks FDA and scientists to work together
Mar 23, 2012
Kathy Giusti discusses personalized medicine in the U.S. and abroad.
Fast Company: Urgency And Optimism: Corporate Culture The Michael J. Fox Foundation Way
Feb. 15, 2012
Todd Sherer wants to put the Michael J. Fox Foundation--the world's largest private funder of Parkinson's Disease research--out of business. That may sound strange, especially considering that if Sherer achieves that goal as CEO of the Foundation, he'll be out of a job.
The Wall Street Journal: Dilemma: When 1 Drug Treats 2 Diseases
Feb. 14, 2012
A drug used to treat multiple sclerosis has also been shown to slow the progression of Lou Gehrig's disease in mice, a nonprofit biotechnology company plans to announce Tuesday. Now, scientists face a dilemma.
The Boston Globe: Driven by loss, father inspires tireless pursuit of a cure
Feb. 9, 2012
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: 7 Ways to Ensure Gifts for Medical Research Do More Good [subscription required]
Feb. 5, 2012
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.
Philanthropy News Digest: Michael J. Fox Foundation Launches Pilot Partnering Program
Feb. 3, 2011
The New York City-based Michael J. Fox Foundation has announced the launch of a pilot program designed to showcase promising research results in its portfolio for funders who might wish to invest in their continued development. The program, which is designed to foster productive relationships between MJFF grantees and pharmaceutical companies and/or venture capital firms, is an extension of MJFF's mission to fund research at the pre-clinical stage and ultimately catalyze investment in Parkinson's drug development.
Nature: US translational-science centre gets under way
Jan. 10, 2012
Scarcely a year after plans to establish it were made public, the National Center for Advancing Translational Sciences (NCATS), the newest branch of the US National Institutes of Health (NIH) in Bethesda, Maryland, is up and running. On 4 January the centre's 230 employees gathered for their first 'all-hands' meeting, at which they heard an exhortation from NIH director Francis Collins and his lieutenants about the importance of the centre's mission: finding ways to radically speed up the development of new drugs, devices and diagnostics.
PharmaTimes: Trial participation vital if pancreatic cancer survival to improve
Jan. 5, 2012
Stepping up patient participation in clinical trials is essential if new treatments are to be developed that can improve the currently dismal prognosis for pancreatic cancer, a US-based advocacy organisation has urged. The five-year relative survival rate for the disease is just 6%, notes the Pancreatic Cancer Action Network, which wants to double that figure by 2020.
The Huffington Post: Top 10 Medical Research Trends to Watch in 2012
Jan. 5, 2012
It's here – FasterCures' annual list of the trends, topics, and initiatives that they'll be watching in 2012.
Wall Street Journal Health Blog: Do It Yourself Drug Development — With Some Help
Dec. 27, 2011
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.
Forbes: Rising Stars Of Science
Dec. 19, 2011
The assignment seemed impossible – even a bit crazy. Find 30 scientists and innovators under age 30 who were worth highlighting in the pages of Forbes.
TIME: The Top 10 Everything of 2011
Dec. 7, 2011
TIME magazine has designated research conducted in the laboratory of the New York Stem Cell Foundation (NYSCF) as the #1 medical breakthrough of the year. NYSCF scientists Dieter Egli and Scott Noggle reprogrammed adult skin cells from patients with Type 1 diabetes to the pluripotent state by combining the cells with unfertilized donor oocytes.
The Wall Street Journal: Citizen Scientists
Dec. 3, 2011
Ordinary people are taking control of their health data, making their DNA public and running their own experiments. Their big question: Why should science be limited to professionals?
The Daily Beast: Rebel With a Cause
Oct. 21, 2011
Hayat Sindi's career as a scientist began with a fib—and that's a good thing. Now the Saudi innovator is doing work that could save millions of lives in the developing world—and launching her own Mideast foundation.
The Scientist: FDA to Revamp Rare Disease Efforts
Sep. 12, 2011
With growing interest from the pharmaceutical and biotech industries in addressing diseases that afflict fewer than 200,000 Americans, the US Food and Drug Administration is going to ramp up its efforts to help drug makers develop treatments for rare diseases, the agency announced in a draft, five-year plan released last week. Starting late next year, the FDA's Center for Drug Evaluation and Research will bolster its Rare Disease Program by providing pharmaceutical and biotech companies specialized training on the development of drugs for rare, or orphan, diseases and improving its outreach to rare disease patient organizations.
Bloomberg: Mogul Using $100 Million in Race to Cure Daughter
Sep. 7, 2011
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: When Patients Band Together
Aug. 30, 2011
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.
The Washington Post: Experts hope that a rare genetic disease may help explain common aging processes
Aug. 22, 2011
When Leslie Gordon's son was diagnosed with progeria, she quit her pediatrics residency to set up the Progeria Research Foundation, with the goals of finding a cure and providing support for affected families. Gordon's team and other researchers in this field have one mantra: Understanding progeria won't only help a few children and their families. It will also help unlock the secrets of the aging process we all experience.
Nature: With strings
July 20, 2011
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 New York Times: Expert Answers on Macular Degeneration
July 19, 2011
Stephen Rose of the Foundation Fighting Blindness responds to reader questions about macular degeneration.
Nature News: Rare-disease studies seek online giving
June 27, 2011
Those wanting to raise awareness about a rare disease will be able to take advantage of an initiative being launched later this year: a website that connects research projects with members of the public who can donate just a few dollars to help to develop cures. The plan, called the Global Genes Fund, will "democratize the research proposal game."
The New York Times: Marching Through Life With Parkinson's
June 13, 2011
The Michael J. Fox Foundation for Parkinson's Research, in partnership with industry, is sponsoring an international study of biological markers that can help monitor progression of the disease. Results of the study, called the Parkinson's Progression Markers Initiative, are expected to facilitate the testing of new drugs that may slow or stop the disease in its tracks.
TIME: Check Your Charity!
June 2, 2011
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.
Harvard Business Review: Crucible: The Reluctant Social Entrepreneur
June 2011
In early 1996, Kathy Giusti was on the fast track at the pharmaceutical company G.D. Searle and aspiring to be one of the first women on the executive committee when, at the age of 37, she got news that would change her life: She had multiple myeloma, a deadly blood cancer. The diagnosis led her to start the Multiple Myeloma Research Foundation and the Multiple Myeloma Research Consortium, two organizations based in Norwalk, Connecticut, that have won kudos for helping accelerate the development of treatments for the disease.
The New York Times: Fostering a Team Approach to Drug Cures
May 5, 2011
Earlier this week, I reported on the Myelin Repair Foundation, an organization that is working to develop a novel treatment for multiple sclerosis, a degenerative disease that currently has no cure. Over the past four decades, despite extraordinary advances in bioscience, cures for many chronic diseases have remained elusive.
The Boston Globe: Drug makers see gains in broadening their reach
May 4, 2011
After years of focusing on common diseases afflicting mostly middle-class and affluent patients, drug companies are devoting more resources to rare disorders, illnesses that are prevalent in the developing world, and medical conditions that affect minority populations in rich countries. The trend, which is slowly gaining momentum, is being driven by several factors, including the emergence of "personalized'' medicines based on an individual's genetic makeup, and the success of companies such as Genzyme Corp. that already specialize in making drugs to treat rare diseases.
The New York Times: Helping New Drugs Out of Research's 'Valley of Death'
May 2, 2011
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.
The Wall Street Journal: ALS Study Shows Social Media's Value as Research Tool
April 25, 2011
A new clinical trial found that lithium didn't slow the progression of Lou Gehrig's disease, but the findings released Sunday also showed that the use of a social network to enroll patients and report and collect data may deliver dividends for future studies. The study was based on data contributed by 596 patients with the disease, formally called amyotrophic lateral sclerosis or ALS.
GantDaily.com: Decoding Human Genes is Goal of New Open-Source Encyclopedia
April 25, 2011
A massive database cataloging the human genome's functional elements — including genes, RNA transcripts, and other products — is being made available as an open resource to the scientific community, classrooms, science writers, and the public, thanks to an international team of researchers. In a paper published in the journal PLoS Biology on April 19, the project — called ENCODE (Encyclopedia Of DNA Elements) — provides an overview of the team's ongoing efforts to interpret the human genome sequence, as well as a guide for using the vast amounts of data and resources produced so far by the project.
TIME: The 2011 TIME 100
April 21, 2011
Marshaling her determination and knowledge of the world of pharma, Kathy Giusti created the Multiple Myeloma Research Foundation. Today, 165 million research dollars, four new approved drugs, and 13 years later, Kathy is in remission but still pressing scientists and the FDA to work together efficiently.
BioArray News: Genomic Tool Vendors Could Benefit From New International Rare-Disease Consortium
April 12, 2011
Companies that sell genomic research tools such as microarrays and next-generation sequencing platforms stand to benefit from a new international effort to both uncover the causes of rare genetic diseases and to develop therapies for them. The International Rare Disease Research Consortium, or IRDiRC, aims to develop diagnostics for every known rare disease by 2020, as well as therapies to treat 200 of them.
Boston Business Journal: Vertex in $75M deal with CF foundation
April 7, 2011
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.
CBS Evening News: Cancer survivor driven by promise to daughter
March 31, 2011
Each year, more than 20,000 Americans are diagnosed with a blood cancer called multiple myeloma. As CBS News medical correspondent Dr. Jon LaPook reports, many people are living longer with the disease, thanks to a woman on a personal crusade.
Observer-Dispatch: Research funding a distant dream for less 'popular' diseases
March 28, 2011
Not just science but public attention and politics are factors in divvying up the billions that America spends on disease research, leaving some "orphan" and "unpopular" diseases underfunded, according to this report. For example, pancreatic cancer is among the deadliest, but it lacks a screening test and has not been a priority in Congress or among private fundraisers.
The Boston Globe: Patient advocacy groups step up role in drug R&D
March 22, 2011
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: A Think Tank Seeks to Accelerate Medical Science’s Search for Cures
March 21, 2011
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.
Health IT News: Patients with Rare Diseases More Likely to Turn to Internet for Support
Feb. 28, 2011
Americans who have health issues are now using the Internet to expand their support networks to include online peers, especially if they have a rare disease, according to a new report by the Pew Internet Project and California HealthCare Foundation.
The New York Times: Trial Shows Cystic Fibrosis Drug Helped Ease Breathing
Feb. 23, 2011
Vertex Pharmaceuticals' new drug, VX-770, improved lung function in people with cystic fibrosis in a late-stage clinical trial. The drug was discovered in collaboration with the Cystic Fibrosis Foundation, one of the first nonprofit disease groups to give money to companies.
Fast Company: The World's Most Innovative Companies 2011
Feb. 16, 2011
The magazine names the Myelin Repair Foundation among the top 10 biotechs for innovation "for its unorthodox, highly collaborative approach to drug development."
Knowledge @ Wharton: Ready, Set, Go! Innovators Set the Pace in the Race for Faster Cures
Feb. 10, 2011
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.
Institutional Investor: Disease Charities: The New Financiers of Drug Development
Jan. 17, 2011
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.
BioCentury: Value Addition
Jan. 9, 2011
This TV segment features Katie Hood discussing how The Michael J. Fox Foundation for Parkinson's Resarch derisks for industry and Anne Quinn Young on how the Multiple Myeloma Research Foundation keeps the pipeline going.
The Scientist: The Profits of Nonprofit
Jan. 2, 2011
Institute of OneWorld Health, the first nonprofit pharmaceutical company in the United States, realizes surprising results when drug development and altruism collide.
Pharmaceutical Approvals Monthly: Myeloma Foundation Uses Patient Connections To Help Speed Drug Trials
Jan. 2011
The Multiple Myeloma Research Foundation’s research model is helping to speed clinical trials of new treatments such as carfilzomib and pomalidomid—likely the next drugs to be approved for multiple myeloma—and has taken a lead role in bringing patients more personalized therapy.
The New York Times: Enlisting the Dying for Clues to Save Others
Dec. 27, 2010
Researchers are increasingly relying on the very patients a new class of cancer drugs failed to cure.
The New Yorker: Mother Courage
Dec. 20, 2011
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.
Fast Company: The Myelin Repair Foundation Encourages Collaboration for a Cure
Nov. 1, 2010
Scientists in their labs. Big Pharma in pursuit of the next blockbuster. An innovative foundation brings them together to speed up the discovery of multiple-sclerosis drugs.
CNN: Michael J. Fox on Parkinson's and Life
Sept. 29, 2010
Dr. Sanjay Gupta has a conversation with the actor about living with the disease and putting the money his foundation has raised to work.
Nature: Research Funding: Making the Cut
Sept. 22, 2010
Careers are made and broken by grant-funding committees. Find out how key decisions are really made.
The New York Times: New Drugs Stir Debate on Rules of Clinical Trials
Sept. 19, 2010
Two cousins developed the same lethal cancer; only one could take part in an experimental drug trial. Critics say that new science behind the drugs has eclipsed the old rules, and ethics, of testing them.
The New York Times: New Discovery Encourages Alzheimer's Researchers
Sept. 2, 2010
In a year when news about Alzheimer's disease seems to whipsaw between encouraging and disheartening, a new discovery by an 84-year-old scientist has illuminated a new direction.
The Wall Street Journal: NIH Takes on New Role in Fight Against Rare Diseases
July 24, 2010
A government program focused on rare diseases has launched five pilot projects that are taking the National Institutes of Health in a new direction: developing drugs.
The New York Times: A Decade Later, Genetic Map Yields Few Cures
June 12, 2010
After 10 years, geneticists are almost back to square one in knowing where to look for the roots of common disease.
Southern California Public Radio: Medical Breakthrough, Bureaucratic Breakdown
June 10, 2010
Forbes: Patients Teach Scientists to Share
June 2, 2010
Newsweek: Desperately Seeking Cures
May 15, 2010
How the road from promising scientific breakthrough to real-world remedy has become all but a dead end.
Fortune: Too Much Data, Too Few Drugs
April 19, 2010
A group of biologists and computer scientists are aiming to set-up a library of
sense of genetic sequences and other raw biological data that are proliferating so fast that biology.
Wall Street Journal: My Data, Your Data, Our Data
April 13, 2010
A bold project hopes that getting scientists to share information can deepen their understanding of diseases
Spectrum Blog by John Seng: All Aboard the TRAIN
April 8, 2010
Arabella Advisors Issue Brief: Investing in Innovative Medical Research
Feb. 2010
An overview of how philanthropic investment in medical research is making an impact.
The New York Times: After Long Fight, Drug Gives Sudden Reprieve
Feb. 23, 2010
The trial of a melanoma drug offers a glimpse at a new kind of therapy tailored to the genetic profile of a cancer.
The New York Times: A Roller Coaster Chase for a Cure
Feb. 22, 2010
At what may be a watershed moment in understanding genetic changes that cause cancer, a small band of doctors is doggedly testing a drug known as PLX4032.
Chronicle of Philanthropy: Charities Move Into Role Traditionally Held by Drug Companies (Subscription Required)
Feb. 7, 2010
A collaboration between the Cystic Fibrosis Foundation and Vertex Pharmaceuticals has led to two promising drug treatments that are now in clinical trials. Inspired by the [CF Foundation's] success, other health organizations including the Juvenile Diabetes Research Foundation, Michael J. Fox Foundation for Parkinson's Research, Muscular Dystrophy Association, and National Multiple Sclerosis Society, have started drug development efforts of their own.
Philanthropy Magazine: Breakthrough
Jan. 1, 2010
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.
Milken Institute Review: R&D Challenges
Winter 2009
FasterCures' Margaret Anderson writes about medical research challenges and opportunities and notes that we should not lose sight of what our "health cure" system. For unless we do a better job of translating promising scientific research into new means of preventing and treating disease, we will lack the wherewithal to contain health care costs -- or, for that matter, productivity losses and human suffering.
Newsweek: Where Are the Cures?
Nov. 1, 2008
Scientists call the gulf between a biomedical discovery and new treatment 'the valley of death.'
Forbes: Patient Power
Sept. 15, 2008
If you are told you have an incurable disease, you might be motivated to help find a cure.
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