National Multiple Sclerosis Society

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The National Multiple Sclerosis Society (NMSS) is a nonprofit organization founded in 1946. [1] It's is an organization dedicated to supporting individuals affected by multiple sclerosis (MS) and funding research to find a cure for the disease. They provide resources, support services, advocacy efforts, and educational programs to improve the lives of people with MS and their families.

Contents

History

The National Multiple Sclerosis Society (NMSS) was founded in New York City as the Association for Advancement of Research on Multiple Sclerosis on March 11, 1946 by Sylvia Lawry. [1] a lawyer seeking a cure for her brother, Bernard, who suffered from multiple sclerosis. Recognizing the absence of any existing foundation or organization aiding individuals with (MS), Ms. Lawry established NMSS. [1]

With chapters spanning the United States, the organization funds research, advocates for social and political change, offers educational resources, and sponsors services that help people with multiple sclerosis and their families. In 2016, Forbes ranked the organization 63rd among the 100 largest U.S. charities. [2] In 2017, Charity Navigator awarded the organization three out of four stars for its performance. [3]

Research

The NMSS supports and funds research activities in early research, translational research that develops laboratory results into treatments, and clinical trials to find out whether they are effective in treating MS. In 2012, the Society invested $44 million in more than 350 new and ongoing projects. [4] [5] . As of 2016, NMSS has raised $974 million for research[5].

Throughout two two-day meetings in 2014–2015, the NMSS developed the Wellness Research Working Group and wellness research priorities. The Research Wellness Group provides information regarding self-directed approaches for disease management to people diagnosed with multiple sclerosis. [6]

Research rewards consist of several types of contributions to researchers in early to late stages of their careers. The following is a list of awards distributed by NMSS [7] to researchers in 2017.

Research funding and grant programs

Career Transition Fellowship

The Career Transition Fellowship program sponsors postdoctoral training and research funding for scientists who demonstrate a dedication to MS research. Awards are in amounts up to $550,000 for a total of five years of training and research. The training period covers two years and research funding covers three additional years for research in a new faculty position.

Collaborative MS Research Center Awards

The NMSS offers funding to research centers with the intent to promote interaction among researchers. The Collaborative MS Research Center Awards program is intended to create collaboration between MS researchers, including independent investigators, and clinical research organizations. In addition, the program reaches out to professionals working in other fields of research to recruit them into MS research projects.

MS Research Center Awards are obtained through an application process through the NMSS MS Grants web page.

Fast Forward commercial/drug development

Fast Forward is a commercial research funding entity under the NMSS which provides funding for drug development and MS research being conducted through commercial entities such as EMD Pharmaceuticals, the University of Cambridge, the University of Edinburgh, and others. Researchers interested in the program are able to apply for funding through the Commercial Funding Opportunities web page.

Daniel Haughton Senior Faculty Award

This award was named after a member of the Board of Directors of the NMSS. Its purpose was to provide funding for training of MS researchers who needed additional education regarding the disease. As of 2017, this award was on hold [8] and not accepting applications.

Harry Weaver Neuroscience Scholarships

Harry Weaver was a researcher in the field of neuroscience who had a dedication to MS research. He was the Director of Research at NMSS from 1966 to 1977. The scholarship in his name is offered to provide salary and research funding for a period of five years to researchers who are beginning their careers in MS research. The program is most often supported through universities.

Health Care Delivery & Policy Contracts

The Health Care Delivery and Policy Research (HCDPR) program funds investigators who are conducting research projects which address NMSS organization's priorities. These priorities are listed by the NMSS as funding, quality, outcomes, and costs for care related to MS.

International Progressive MS Alliance

The International Progressive MS Alliance was founded in 2012 as the International Progressive MS Collaborative. The MS Alliance membership is composed of MS organizations from around the world. The Alliance provides two different funding awards, including the Challenge Award [9] and Collaborative Network Award grants. Both grants provide funding over multiple years to researchers and institutions in the international community. [10]

Mentor-based Postdoctoral Rehabilitation

This program supports a combination of mentors and MS postdoctoral training institutions to recruit and train MS rehabilitation fellows. Mentors are required to be experienced MS researchers who have an established and active participation in their field. Interested parties must submit an application for the program through the NMSS website.

Participants in the program include the Duke University School of Medicine, [11] the Weizmann Institute of Science, [12] University of Colorado Anschutz Medical Campus, University of Utah, [13] and additional related institutions.

Clinician Scientist Development Award

The American Academy of Neurology and NMSS have partnered to develop this grant program. The program focuses on providing grant funding to MS researchers. In 2016, the American Academy of Neuroscience Clinician Scientist Development Program [14] awarded $3 million to research and training programs with a focus on neuroscience.

Pilot Research Grants

High-risk pilot research programs [14] focus on cutting-edge ideas and methods that have not been tested and may contribute to MS medical research. The Pilot Research Grants provide one year of research funding to pilot programs in order to develop results which can be used to apply for long term funding programs.

Related Research Articles

<span class="mw-page-title-main">Multiple sclerosis</span> Disease that damages the myelin sheaths around nerves

Multiple sclerosis (MS) is an autoimmune disease in which the insulating covers of nerve cells in the brain and spinal cord are damaged. This damage disrupts the ability of parts of the nervous system to transmit signals, resulting in a range of signs and symptoms, including physical, mental, and sometimes psychiatric problems. Specific symptoms can include double vision, vision loss, eye pain, muscle weakness, and loss of sensation or coordination. MS takes several forms, with new symptoms either occurring in isolated attacks or building up over time. In the relapsing forms of MS, between attacks, symptoms may disappear completely, although some permanent neurological problems often remain, especially as the disease advances. In the progressive forms of MS, bodily function slowly deteriorates and disability worsens once symptoms manifest and will steadily continue to do so if the disease is left untreated.

<span class="mw-page-title-main">National Institute of Neurological Disorders and Stroke</span> Department of the U.S. National Institutes of Health

The National Institute of Neurological Disorders and Stroke (NINDS) is a part of the U.S. National Institutes of Health (NIH). It conducts and funds research on brain and nervous system disorders and has a budget of just over US$2.03 billion. The mission of NINDS is "to reduce the burden of neurological disease—a burden borne by every age group, every segment of society, and people all over the world". NINDS has established two major branches for research: an extramural branch that funds studies outside the NIH, and an intramural branch that funds research inside the NIH. Most of NINDS' budget goes to fund extramural research. NINDS' basic science research focuses on studies of the fundamental biology of the brain and nervous system, genetics, neurodegeneration, learning and memory, motor control, brain repair, and synapses. NINDS also funds clinical research related to diseases and disorders of the brain and nervous system, e.g. AIDS, Alzheimer's disease, epilepsy, muscular dystrophy, multiple sclerosis, Parkinson's disease, spinal cord injury, stroke, and traumatic brain injury.

The Multiple Sclerosis Society is the UK's largest charity for people affected by multiple sclerosis (MS). Based in London, it has offices and local groups in England, Northern Ireland, Scotland and Wales. It gained charitable company status in 2010.

<span class="mw-page-title-main">American Academy of Neurology</span> American medical association

The American Academy of Neurology (AAN) is a professional society representing over 40,000 neurologists and neuroscientists. As a medical specialty society it was established in 1948 by A.B. Baker of the University of Minnesota to advance the art and science of neurology, and thereby promote the best possible care for patients with neurological disorders. It is based in Minneapolis, Minnesota, with a health policy office in Washington, DC.

Inflammatory demyelinating diseases (IDDs), sometimes called Idiopathic (IIDDs) due to the unknown etiology of some of them, are a heterogenous group of demyelinating diseases - conditions that cause damage to myelin, the protective sheath of nerve fibers - that occur against the background of an acute or chronic inflammatory process. IDDs share characteristics with and are often grouped together under Multiple Sclerosis. They are sometimes considered different diseases from Multiple Sclerosis, but considered by others to form a spectrum differing only in terms of chronicity, severity, and clinical course.

Research in multiple sclerosis may find new pathways to interact with the disease, improve function, curtail attacks, or limit the progression of the underlying disease. Many treatments already in clinical trials involve drugs that are used in other diseases or medications that have not been designed specifically for multiple sclerosis. There are also trials involving the combination of drugs that are already in use for multiple sclerosis. Finally, there are also many basic investigations that try to understand better the disease and in the future may help to find new treatments.

Orla Hardiman is an Irish consultant neurologist. She was appointed Professor of Neurology by Trinity College University of Dublin in 2014, where she heads the Academic Unit of Neurology, housed in Trinity Biomedical Sciences Institute. She is a HRB Clinician Scientist and Consultant Neurologist at the National Neuroscience Center of Ireland at Beaumont Hospital, Dublin. She leads a team of thirty researchers focusing on clinical and translational aspects of amyotrophic lateral sclerosis and related neurodegenerations. Hardiman has become a prominent advocate for neurological patients in Ireland, and for patients within the Irish health system generally. She is co-founder of the Neurological Alliance of Ireland and Doctors Alliance for Better Public Healthcare. In the past, she established the bi-annual Diaspora Meeting, a forum for Irish neurologists based overseas to present and discuss their research findings with neurologists working in Ireland.

Aaron E. Miller is an American neurologist, the first Chairman of the Multiple Sclerosis section of the American Academy of Neurology (AAN) and recognized as a multiple sclerosis clinician.

<span class="mw-page-title-main">Chronic cerebrospinal venous insufficiency controversy</span> Medical condition

Chronic cerebrospinal venous insufficiency is a term invented by Italian researcher Paolo Zamboni in 2008 to describe compromised flow of blood in the veins draining the central nervous system. Zamboni hypothesized that it might play a role in the cause or development of multiple sclerosis (MS). Zamboni also devised a surgical procedure which the media nicknamed a liberation procedure or liberation therapy, involving venoplasty or stenting of certain veins. Zamboni's ideas about CCSVI are very controversial, with significantly more detractors than supporters, and any treatments based on his ideas are considered experimental.

<span class="mw-page-title-main">Multiple sclerosis diagnosis</span>

Current standards for diagnosing multiple sclerosis (MS) are based on the 2018 revision of McDonald criteria. They rely on MRI detection of demyelinating lesions in the CNS, which are distributed in space (DIS) and in time (DIT). It is also a requirement that any possible known disease that produces demyelinating lesions is ruled out before applying McDonald's criteria.

The Mischer Neuroscience Institute is a combined research and education effort between the Vivian L. Smith Department of Neurosurgery and the Department of Neurology at McGovern Medical School at UTHealth Houston and Memorial Hermann Hospital. Located in Houston, the Institute draws patients from around the world for specialized treatment of diseases of the brain and spine. It was the first center in Texas and one of only a few institutions in the country to fully integrate neurology, neurosurgery, neuroradiology, neuro-oncology, spine surgery, pain medicine and neurorehabilitation.

<span class="mw-page-title-main">Howard L. Weiner</span> American neurologist, neuroscientist and immunologist

Howard L. Weiner is an American neurologist, neuroscientist and immunologist who is also a writer and filmmaker. He performs clinical and basic research focused on multiple sclerosis (MS) and other neurologic diseases such as Alzheimer's disease and Lou Gehrig's disease (ALS). His work also focuses on autoimmune diseases such as diabetes. Weiner is the Robert L. Kroc Professor of Neurology at Harvard Medical School, director of the Brigham MS Center at the Brigham and Women's Hospital and co-director of the Ann Romney Center for Neurologic Diseases established in 2014, at the Brigham and Women's Hospital in Boston, Massachusetts.

Sylvia Lawry was a social campaigner on behalf of people with multiple sclerosis. She founded the National Multiple Sclerosis Society in 1947 and co-founded the Multiple Sclerosis International Federation in the same year.

<span class="mw-page-title-main">Harry M. Weaver</span> American neuroscientist

Harry M. Weaver was an American neuroscientist and researcher who made contributions to medical research in the fields of Multiple sclerosis, and was the Director of Research at the National Foundation for Infantile Paralysis when the Polio vaccine was discovered and developed by Jonas Salk. Dr. Weaver also served as the Vice President for Research at the American Cancer Society, Vice President for Research and Development at the Schering Corporation, and as the Director of Research at the National Multiple Sclerosis Society.

Multiple Sclerosis Australia, or MS Australia, is a national non-profit organization in Australia that coordinates and allocates funds for multiple sclerosis research.

<span class="mw-page-title-main">Katerina Akassoglou</span> Greek neuroimmunologist

Katerina Akassoglou is a neuroimmunologist who is a Senior Investigator and Director of In Vivo Imaging Research at the Gladstone Institutes. Akassoglou holds faculty positions as a Professor of Neurology at the University of California, San Francisco. Akassoglou has pioneered investigations of blood-brain barrier integrity and development of neurological diseases. She found that compromised blood-brain barrier integrity leads to fibrinogen leakage into the brain inducing neurodegeneration. Akassoglou is internationally recognized for her scientific discoveries.

Alan J. Thompson, MD, FMedSci, FRCP, FRCPI, is Dean of the Faculty of Brain Sciences at UCL; Pro-Provost for London at UCL; Garfield Weston Professor of Clinical Neurology and Neurorehabilitation at the UCL Queen Square Institute of Neurology. He is also a consultant neurologist at the University College London NHS Hospitals Foundation Trust working at the National Hospital for Neurology and Neurosurgery. He is Editor-in-Chief for Multiple Sclerosis Journal.

Multiple Sclerosis Australia, commonly referred to as MS Australia, is a prominent national non-profit organization with a primary focus on research and advocacy in support of individuals affected by Multiple Sclerosis (MS). This organization achieved official registration as a charitable entity in Australia in the year 1975. There are over 25,000 people living with MS in Australia and MS Australia serves as the peak body for all Australians living with or otherwise affected by MS.

Catherine Lubetzki is a French neurologist who is a professor at Sorbonne University. She is head of the Department of Neurological Diseases at the Pitié-Salpêtrière Hospital, where she coordinates the Salpêtrière Multiple Sclerosis clinical research centre. Her research involves the physiology of multiple sclerosis, and identifying the interactions between myelin and axons. In 2019, she was awarded the Multiple Sclerosis International Federation Charcot Award.

Brenda Banwell is Chief of the Division of Neurology and Co-Director of the Neuroscience Center, and Professor of Neurology at Children's Hospital of Philadelphia and holder of the Grace R. Loeb Endowed Chair in Neurosciences. She also holds the title of Professor of Pediatrics and Neurology at the Perelman School of Medicine at the University of Pennsylvania.

References

  1. 1 2 3 "Our Story". National MS Society.
  2. "National Multiple Sclerosis Society on the Forbes The 100 Largest U.S. Charities List". Forbes. Retrieved 2017-05-12.
  3. Tobias, Ed (September 2017). "When Donating to MS Causes, Where Does the Money Go?" . Retrieved 2021-04-06.
  4. List of Current Research Projects Funded by the National MS Society. May 2015 [ verification needed ]
  5. Research We Fund [ verification needed ]
  6. Motl, Robert W; Mowry, Ellen M; Ehde, Dawn M; LaRocca, Nicholas G; Smith, Kathy E; Costello, Kathleen; Shinto, Lynne; Ng, Alexander V; Sullivan, Amy B (2017-01-12). "Wellness and multiple sclerosis: The National MS Society establishes a Wellness Research Working Group and research priorities". Multiple Sclerosis Journal. 24 (3): 262–267. doi:10.1177/1352458516687404. ISSN   1352-4585. PMC   5494005 . PMID   28080254.
  7. "List of Current Research Projects Funded by the National MS Society" (PDF). National Multiple Sclerosis Society. January 2017. Retrieved May 12, 2017.
  8. https://researchfunding.duke.edu/daniel-haughton-senior-faculty-awards [ dead link ]
  9. "International Progressive MS Alliance | Challenge Awards". www.progressivemsalliance.org. Archived from the original on 2015-09-18.
  10. "International Progressive MS Alliance |". www.progressivemsalliance.org. Retrieved 2017-05-13.
  11. "Mentor-Based Postdoctoral Fellowship in Rehabilitation Research | Research Funding". researchfunding.duke.edu. Retrieved 2017-05-13.
  12. "National Multiple Sclerosis Society". www.weizmann.ac.il. Retrieved 2017-05-13.
  13. "Home – Office of Sponsored Projects – The University of Utah". osp.utah.edu. Retrieved 2017-05-13.
  14. 1 2 Neurology, American Academy of. "Announcing the 2016 American Academy of Neurology Research Program Recipients". www.prnewswire.com (Press release). Retrieved 2017-05-13.