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Press Releases & Media Coverage
Successful Beginning for Wellstone Muscular Dystrophy Center at Boston Biomedical Research Institute
WATERTOWN, MA - June 24, 2009 —Last week, physicians, scientists, patients and members of the biotech industry from around the world gathered for the first major meeting of a unique research center on muscular dystrophy--the Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research Center.
Established last year and based at Boston Biomedical Research Institute (BBRI) in Watertown, MA, it is the only Wellstone Center and the only center in the world to focus solely on finding treatments and cures for the second most common adult form of MD known as facioscapulohumeral (FSH) muscular dystrophy. It is also the only Wellstone Center (there are five others in the US) in New England.
The purpose of the two-day retreat (June 16-18) was for world experts on this debilitating disease to present their current research findings, discuss and plan collaborative projects and fine-tune future research.
“We accomplished a great deal during this first gathering,” said Dr. Charles Emerson, director of Boston Biomedical Research Institute and the Wellstone Center. “This was a wonderful opportunity to bring together the best minds involved in FSH research.
We heard from individuals involved with this disease from Australia to Brazil to Iowa to Children’s Hospital here in Boston. Their perspectives inform our direction moving forward.”
FSH, which affects at least one in 20,000 adults worldwide, is characterized by a weakening of the skeletal muscles, beginning in the face and slowly progressing to the shoulder and upper-arm muscles and then down to the abdominal and foot-extensor muscles. In the worst cases, all skeletal muscles are lost, hearing and vision are involved, and respiratory insufficiency can cause severe disability.
The six Wellstone Centers—inspired by and named for the late Senator Paul D. Wellstone and funded by the National Institutes of Health--represent a paradigm shift in research because of their intensely collaborative nature and especially because of their desire and mandate to include patient advocacy organizations full partners in the research process.
Meeting participants came from BBRI, the FSH Society, Children's Hospital of Boston, Harvard, Acceleron and Novartis, Johns Hopkins Medical Institute, University of Maryland, University of Texas, Southwestern, University of Sao Paulo in Brazil, the University of Washington, and the FSH Global Research Foundation in Australia.
The Boston Biomedical Research Institute is a not-for-profit institution dedicated to the understanding, treatment, and prevention of specific human diseases such as muscular dystrophy, cancer, cardiovascular disease, and Alzheimer’s. For more information, visit us on the web at www.bbri.org.
Contact: Patti Jacobs
617-864-2712
pjacobs12@comcast.net
Elizabeth Erickson
617-610-0771
erickson@bbri.org
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Boston Biomedical’s Technology Forum a successful beginning for new collaborations
WATERTOWN, Mass. – May 15, 2009- An audience of nearly 40, representing local companies, scientists and the public recently gathered at Boston Biomedical Institute’s first Technology Forum to learn more about the Institute’s mission and its biotechnology research programs. “Our purpose was to reach out to the Metro-West biotech community and the public in hopes of forging new alliances,” says Henry Paulus, deputy director the Institute.
Sponsored by the Massachusetts Biotechnology Council, Cambridge Trust Company, VWR Scientific and Fisher Scientific, the forum showcased three of BBRI's unique interdisciplinary and highly collaborative technology centers.
The audience, representing pharmaceutical and biotechnology industries and interested Watertown/Belmont residents, was welcomed by Mr. Imran Nasrullah, Chief Financial Officer of the Massachusetts Biotech Council, who emphasized the essential role played by independent, nonprofit institutions like BBRI, in fostering new technology and treatments through basic research and collaborations with industry.
The featured BBRI centers included the Wellstone Muscular Dystrophy Cooperative Research Center, the Adult Stem Cell Technology Center, and the Protein Structure & Interactions Center.
According to Paulus, the forum was a successful beginning to a series of such programs planned for the next several years.
The Boston Biomedical Research Institute is a not-for-profit institution dedicated to the understanding, treatment, and prevention of specific human diseases such as muscular dystrophy, cancer, cardiovascular disease, and Alzheimer’s. For more information, visit us on the web at www.bbri.org.
Contact: Patti Jacobs
617-864-2712
pjacobs12@comcast.net
Elizabeth Erickson
617-610-0771
erickson@bbri.org
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NIH funds new Wellstone Research Center for Muscular Dystrophy at Boston Biomedical Research Institute
First Wellstone center in New England and first center in the world to focus exclusively on facioscapulohumeral muscular dystrophy
BOSTON (Watertown), Mass.—September 10, 2008 - The US National Institutes of Health (NIH) have awarded $9 million to launch a unique collaboration of researchers, clinicians, patients, government research agencies and pharmaceutical/biomedical companies to study the causes and potential treatments for facioscapulohumeral muscular dystrophy (FSHD), a muscle weakening and disabling disease that affects, at the least, one in 20,000 individuals worldwide. The award will create the first Senator Wellstone Muscular Dystrophy Cooperative Research Center (MD CRC) to focus on FSHD, the award recipients announced today.
Headquartered at the Boston Biomedical Research Institute (BBRI), this center for excellence in muscular dystrophy will be the first ever in New England, and the first of these prestigious centers--named for the late Senator Paul Wellstone -- to focus on FSHD, the second most prevalent adult muscular dystrophy. The Wellstone MD CRCs themselves represent a paradigm shift in research because of their intensely collaborative nature and particularly because of their mandate to include the patient advocacy organizations as a full partner in the research process.
“We see this as a unique opportunity to tackle a tough disease in the most efficient way to set the stage for development of therapies” says Dr. Charles Emerson, director of the new center and president of BBRI. “We have recruited the best minds in basic and clinical research and have an extraordinarily committed patient advocacy group to help us focus on this problem.”
Co-director, Dr. Louis Kunkel, a professor of Genetics and Pediatrics at Harvard Medical School, director of the Genomics Program at Children’s Hospital and an investigator with the Howard Hughes Medical Institute, agrees. “We believe this research center model will bring discoveries from bench to bedside more rapidly than the traditional model, because we already have the full participation of the people with the most at stake in our work—the patients,” he says.
In fact, both Emerson and Kunkel admit that without the advocacy of Daniel Paul Perez, FSHD patient, resident of Bedford, MA, and the founder and CEO of the FSH Society, the new Wellstone Center might not have become a reality. According to the two scientists, Perez has been fighting tirelessly behind the scenes and in front of Congress, the NIH and the scientific community for 20 years for funds, increased research and attention for this disease. “This is a victory for all of us,” says Perez. “It represents decades of work by dedicated researchers, Society leaders and patients to find a research home for this disease.” Perez was diagnosed as a toddler and has been the national leader for patients with FSHD since graduating from college.
Another major collaborator will be Acceleron Pharma, a biotech company that will partner with the Wellstone Center scientists and clinicians to determine the safety and effectiveness of a new class of drugs that enhance muscle mass and strength. The hope is that these drugs will help maintain muscle strength and physical function in patients with FSHD and other dystrophies.
Additionally, Genzyme Corporation will participate in the development of cell-based therapeutic approaches, which also have noteworthy promise.
Economically, the Wellstone Center will have a positive impact, according to Bob Coughlin, president of Massachusetts Biotechnology Council, who believes it is just the kind of program that will strengthen the regional economy and the life science industry in Massachusetts. “The new center at Boston Biomedical Research Institute will be a magnet for drawing talent into the state,” says Coughlin, adding, “We applaud the partners of the Wellstone Center for their commitment to cooperating on this important project, which will expand our understanding of a devastating disease and bring together scientists and industry.”
In a congratulatory letter of support for the Wellstone Center, Senator Edward Kennedy wrote: “Beyond research, this new center will provide future medical health pioneers insight and knowledge into muscular disease treatment as well as promote national cooperation among top leading research centers.”
“Indeed, a major goal of ours is to make the work we do here available to the entire international scientific community,” says Emerson, who sees the center as a resource to help anyone investigating FSHD or similar diseases.
The Wellstone center partners will identify molecular biomarkers to monitor the effectiveness of therapeutics during clinical trials and establish a repository of FSHD-diseased and normal muscle stem cells to provide the international community with the resources critically needed to develop and test new drug and cell-based therapeutics. A key component of the Wellstone Center will be to educate and train the next generation of research and clinical scientists in an outstanding environment for muscle disease research.
Like the five other Wellstone centers established since 2002, the Boston center is the legacy of Senator Paul Wellstone, who was the Congressional champion of muscular dystrophy. Perez and the Senator worked on the original MD Care Act 2001 legislation together before the Senator’s untimely death in a plane crash in 2002.
Facioscapulohumeral muscular dystrophy is the second most common adult-onset muscular dystrophy and currently has no treatment or cure. Perez notes, “The prevalence of FSHD is probably three times higher than previously thought given our increased experience with the disease and improved genetic testing for FSHD.” Its major characteristic is weakening of the skeletal muscles, beginning in the face and slowly progressing to the shoulder and upper-arm muscles and then down to the abdominal and foot-extensor muscles. In the worst cases, all skeletal muscles are lost, hearing and vision are involved, and respiratory insufficiency can cause severe disability and even death.
In addition to Emerson, Kunkel and Perez, the center’s network of collaborators includes Kathryn Wagner, M.D., Ph.D., The Johns Hopkins Hospital; Mayana Zatz, M.Sc., Ph.D., University of Sao Paolo, Brazil; Robert J. Bloch, Ph.D., University of Maryland School of Medicine; Woodring Wright, M.D., Ph.D., University of Texas Southwestern Medical Center; and Jeffery B. Miller, Ph.D., Boston Biomedical Research Institute.
The opening of the new Senator Wellstone Muscular Dystrophy Cooperative Research Center will take place at Boston Biomedical Research Institute at 64 Grove Street in Watertown, MA, from 4:00 to 6:00 pm on Friday, October 10th. The public will be welcome.
The Boston Biomedical Research Institute is a not-for-profit institution dedicated to the understanding, treatment, and prevention of specific human diseases such as muscular dystrophy, cancer, cardiovascular disease, and Alzheimer’s disease. For more information, visit us on the web at www.bbri.org.
The FSH Society, a not-for-profit volunteer health organization founded in 1991, is located at the Boston Biomedical Research Institute and is a comprehensive resource for individuals with FSHD and their families. The FSH Society funds research into this genetic disease that leads to progressive muscle wasting and weakness. The disease affects between 330,000 and one million people worldwide. In addition, the Society provides research grants, advocacy, education and outreach to professionals, patients and advocates on their behalf. For more information on FSHD please see www.fshsociety.org.
Contact: Patti Jacobs
617-864-2712
pjacobs12@comcast.net
Elizabeth Erickson
617-610-0771
erickson@bbri.org
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Powerful New Cooperative Research Model Possible at Independent Research Institutes
WATERTOWN, Mass. – April 11, 2008 -“Drug makers turning to nonprofits for cash,” [Wallack, Todd, Boston Globe, April 7, 2008, Section C] detailed the partnership between biotech/pharmaceutical companies and private foundations to search for cures. Missing was the role that patients have in bringing these vital partnerships into being with advocacy and start-up funds. Patient involvement in the therapeutic development pipeline is equally important as basic, translational, and clinical research efforts.
A more powerful collaboration would encompass patient advocacy groups, independent research institutes and federal funding sources. Boston Biomedical Research Institute (BBRI), a nonprofit research center, embraces this new patient-involvement model in its work on facioscapulohumeral muscular dystrophy (FSHD)--a crippling disease that gradually destroys all skeletal muscles and is the second most prevalent adult dystrophy. BBRI and the FSH Society, a nonprofit grassroots patient organization, are working with two Massachusetts-based companies and several world-renowned clinical researchers to create a center for developing treatments. Together, we have applied to National Institutes of Health (NIH) for funding as a Senator Paul Wellstone Muscular Dystrophy Cooperative Research Center.
This new paradigm accelerates therapeutics for dystrophy. Now, independent research institutes, with NIH input and funding, can harness the power of the cooperative research model and integrate patients fully into research, trials and drug development.
Daniel P. Perez
President and CEO
FSH Society
Charles P. Emerson, Jr., Ph.D.
Director and Senior Scientist
Boston Biomedical Research Institute
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BBRI Sustains Important Baa3 Bond Rating
WATERTOWN, Mass. – March 25, 2008 - Boston Biomedical Research Institute (BBRI) in Watertown, Massachusetts, was once again given a Baa3 bond rating with a stable outlook by Moody’s Investor Services, affirming the Institute’s financial stability in an era of declining NIH funding within an overall precarious economy that have left some similar organizations struggling to survive. “We are pleased with this confirmation of our financial health,” says BBRI Director and Senior Staff Scientist Charlie Emerson, who adds that the Institute’s research efforts continue to be robust and growing.
Boston Biomedical Research Institute is an independent, non-profit research institution devoted to increasing understanding of the causes, prevention and treatment of such diseases as heart disease, cancer, muscular dystrophy and Alzheimer's. Researchers at BBRI look at theses diseases at the biochemical and cellular level to unravel the mysteries of these diseases at their most rudimentary.
Moody’s Investor Services, which is one of the two foremost credit rating organizations in the US, reported that: “The stable outlook reflects our expectation that BBRI's management is focused on containment of operating expenses and generation of new revenue streams in light of slowed federal research funding. We believe
that the Institute's largely unrestricted financial resource base provides a good cushion for near-term operating pressure.” The report added that “…debt service reserve fund, security interest in gross receipts, and the first mortgage on the research facility provide some additional bondholder security.”
According to Dr. Emerson, “Our commitment to diversify our streams of revenue is reflected in the hiring of a new director of advancement and in our decision to enhance board support, increase submissions to private foundations, increase planned giving, and pursue potential state funding, as possible supplemental funding resources.”
Among the Institute’s scientific breakthroughs have been research that paved the way for the Troponin Assay, one of the standard tests now used by physicians to determine whether a person is having a heart attack and Hyaluronan, essential for eye surgeries and widely used in the treatment of osteoarthritis. Hyaluronan, a carbohydrate polymer that can be injected directly into osteoarthritic joints, may help augment the joint’s natural fluids, increasing mobility and shock absorbency.
Founded in 1968, Boston Biomedical Research Institute is a not-for-profit basic research institute dedicated to the understanding, treatment and prevention of a wide range of human diseases and conditions. For more information visit www.bbri.org.
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