Funding MS Research: National MS Society, Myelin Repair Foundation, Nancy Davis Foundation, Montel
In the United States, we have several non-profit MS-related organizations involved with conducting research, supporting research, or raising funds for research. Of course, we are not the only ones worldwide conducting research into the treatment and possible cure of MS, but since HealthCentral is based in the U.S., I thought we’d start here at home.
Without a doubt, the National MS Society (NMSS) has the largest budget when it comes to funding MS research among non-government not-for-profit organizations, devoting nearly $50 million each year to a spectrum of key initiatives and projects. In a previous post, Sylvia Lawry: The National MS Society and the Multiple Sclerosis International Federation, I introduced one of our significant MS heroes and this very important organization which started out in 1946 as simply a research group but which has grown into much more.
In 2007, the National MS Society established Fast Forward, a wholly owned subsidiary of the Society with an innovative business approach, to speed the development of treatments and seek a cure for people living with MS by:
* Accelerating commercial development of innovative MS research
* Funding MS drug discovery in biotechnology and pharmaceutical companies
* Ensuring a global perspective in identifying funding opportunities
“Fast Forward aims to close the gap [created by difficulty companies may have in securing funds to movement scientific ideas from basic research into preclinical development]. We will partner with investors and donors who see the value of innovative drug discovery. We will seek out promising companies and scientists with fresh ideas. We will grant seed money to projects with potential. And we will speed the movement of those projects toward FDA approval … providing more MS treatments to more people, faster.”
A large volume of information is available regarding the research NMSS supports and funds - past, present, and future - on their website. Too much information to detail here. I recommend that you spend some time reading the following webpages including the pages to which they are linked:
The Myelin Repair Foundation (MRF) was created in 2004 to address the systemic problems in medical research and commercial drug development that work against the rapid delivery of patient treatments. The MRF’s Accelerated Research Collaboration™ (ARC™) model is a radical new process that recognizes the incentives and limitations of academic scientists, commercial biopharma, government regulators, and patients and their families, and fosters behavioral changes by adding tangible value to everyone.
Today, the MRF is the world’s largest research organization with a singular focus on understanding how myelin is formed, damaged in MS, and repaired. MRF supports a collaboration of pre-selected scientists who have agreed to jointly develop and conduct experiments that will lead to targeted myelin repair discoveries. MRF shares its revolutionary research model with other disease research organizations, enabling rapid discovery of treatments and cures for other diseases.
How is the MRF Accelerated Research Collaboration™ different from the traditional model of medical research?
In the traditional model for medical research, individual scientists focus on narrow fields of interest, often choosing specific projects based personal intellectual curiosity and/or the availability of funding rather than any overall desired research outcome. Traditional medical research is a highly competitive business. Few scientists share information until they have completed their experiments and published the results of their work. As a result, the cycle time from concept to discovery to publication ranges from four to six years.
There are limited incentives for scientists to patent and commercialize discoveries. Without patent protection of discoveries, the financial risk for pharmaceutical companies to undertake drug development and clinical trials is often prohibitive. For complex diseases like multiple sclerosis these factors have slowed progress toward treatments.
Acknowledging the limitations of the traditional model of medical research, the MRF has assembled a world-class team of research scientists at four separate universities and provided them with a collaboration infrastructure—funding, a shared, outcome-focused research plan, membership and technology transfer agreements with the participating universities, and business management support—that allows them to focus on their core expertise. Further by protecting the intellectual property, the financial risks to pharmaceutical companies are significantly reduced, thereby increasing their interest in undertaking new drug development and clinical trials.
Nancy Davis Foundation for Multiple Sclerosis
(aka Race to Erase MS)
Founded in 1993, the Nancy Davis Foundation for Multiple Sclerosis (NDFMS) is dedicated to the treatment and ultimate cure of MS. Funding research is the core focus of the Foundation and all funds raised support the Center Without Walls program, a selected network of the nation’s top seven MS research centers. This nationwide collaboration of physicians, scientists and clinicians are on the cutting-edge of innovative research programs and therapeutic approaches to eradicate MS.
The Centers work as a team constantly communicating, never duplicating. It was the goal of Nancy Davis to build a winning team and the Foundation sought out the best and the brightest MS research facilities throughout the world. It is the hope of her Foundation that in addition to combating MS through research in a clinical environment, that an increased awareness will be created by educating the public about this devastating disease.
In 1993, the Foundation held the first Race to Erase MS event which has become an exciting star-studded gala since its inception. The foundation has gained the support of many key individuals in the fashion and entertainment worlds, including Tommy Hilfiger who has been a major sponsor since 1997 and who has a sister living with MS. The annual Race to Erase MS event has raised over $30 million for multiple sclerosis research to date.
The Montel Williams MS Foundation was established to further the scientific study of MS in October 2000. The goals of The Montel Williams MS Foundation are to provide financial assistance to select organizations and institutions conducting the most current research, to raise national awareness about MS, and to educate the public. Since its inception, the Foundation, with Montel Williams lending his time and talents to numerous fund-raising initiatives, has distributed more than $1.5 million to research entities that are studying MS.
Note: I include the Montel Williams MS Foundation so that readers are aware of the initiative. However no updates have been provided on the website since August 2008 and the most recent tax form available for review is from 2007. It is unclear if the Foundation is actively awarding grants at this time.
Next: MS Research Organizations: Depositories, Registries, and Tissue Banks