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National Multiple Sclerosis Society

From Wikipedia, the free encyclopedia

The National Multiple Sclerosis Society (NMSS) is a non-profit organization based in New York City with chapters located throughout the United States. The organization funds research, advocates for social and political change, provides education, and sponsors services that help people with multiple sclerosis and their families.

The NMSS was founded as the Association for Advancement of Research on Multiple Sclerosis,[1] in 1946. Since that time it has become a national, multi-chapter, non-profit organization. It has been rated by Forbes magazine[1] as #63 in the 100 Largest U.S. Charities 2016 Ranking.

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Transcription

[Narrator:] The patient with multiple sclerosis staggers down a long road, weaving between despair on the one side and hope on the other. The doctor who must guide this patient is faced with a disorder in which the diagnosis is a gamble of odds and probabilities. The etiology is hidden in a jungle of clues and the therapy stirs a broth of heated dispute. It is hoped that this film will enable the practitioner and the student to better understand this elusive disease. [Music] [Narrator:] This is a...at 19, she had a two-week episode of burning and hypersensitivity of the right arm. A second episode occurred nine months later, beginning with sharp pains in the right forehead and scalp, then numbness and tingling in the right fingers and toes, ascending in three days to include the entire right side below the neck. After one month, these symptoms had almost cleared, but she then developed loss of vision in the left eye over a three-day period, followed in two weeks by blurring of vision in the right eye with pain on movement of the eyes. At this time, she also noted a tingling down the back, on bending the head forward. On examination at the peak of this attack, she could only count fingers with the left eye, and the visual field showed a huge scotoma involving the central region and the area around the blind spot. On the right, visual acuity was 20 over 40 and field-testing showed a scotoma involving the area around the blind spot and the entire inferior nasal quadrant, but sparing central vision. The optic discs appeared normal. These findings of optic neuritis gradually disappeared over the next two months. In the four years since then, she has remained well, except for one persistent symptom. [Patient:] When I bend my neck down, I get an electric shock sensation that extends from my neck down my back, through my legs. [Narrator:] This electric shock-like sensation on flexion of the neck is called Lhermitte's sign and is considered a manifestation of posterior column damage in the cervical spinal cord. This is a 43-year-old sales manager for a dairy company. At 33, he had an episode of left-sided numbness and weakness, unsteady walk, and double vision, with complete recovery in six months. At 36, he developed slurred speech, difficulty focusing his eyes, clumsiness of the left arm and leg, hypersensitivity of the right side of the body, and Lhermitte's sign. He improved after one month but was left with permanent residual. This stayed the same for the next four years, then slowly worsened. Ten years after onset, he demonstrates the following: His eye movements are impaired in all directions of gaze. When he looks to the sides, the in-turning eye is paralyzed. The out-turning eye shows horizontal nystagmus. There is weakness of upward gaze, left more than right, and vertical nystagmus on upward and downward gaze. This disconjugate gaze difficulty is called internuclear ophthalmoplegia. It represents damage to the median longitudinal fasciculus, a tract that runs through the dorsal portion of the brain stem on each side of the midline. Bilateral internuclear ophthalmoplegia is considered by many authorities to be pathognomonic of multiple sclerosis. His speech shows dysarthria characterized by jerky rhythm and slurring. [Patient 2:] On July 24th, 1858, after consulting friends about the proposal, Abraham Lincoln, the Republican candidate for senator, challenged his Democratic opponent, the incumbent, Stephen A. Douglas, to divide time and address the same audience during the present canva.... [Narrator:] Testing of his hands shows good coordination on the right. But on the left, there is a tremor of the outstretched hand accentuated by performing any accuracy test. There is also inability to perform rapid alternating movements with this hand. These signs represent the ataxia of cerebellar disease. Testing of his legs reveals the weakness on the left. [The doctor examines the way each leg reacts to stretches.] There is ankle clonus on the left. There are bilateral upgoing toes on plantar stimulation. These signs are indicative of damage to the pyramidal tract somewhere between the cerebral cortex and the lumbar cord. This is a 23-year-old insurance company clerk. Beginning at age 18, she has had one episode each year. The first attack consisted of buzzing and decreased hearing in the left ear, double vision and impaired balance, with complete recovery in six weeks. The second attack included left-sided tinnitus and hearing loss, staggering walk, double vision, slurred speech, tingling in the right hand, and numbness in both legs below the knees. After six months, these symptoms improved, but she was left with permanent nystagmus and ataxia. Her third attack began with pain and foggy vision in the right eye, reaching a peak in one month at which time the visual acuity was 20 over 30, and the visual fields showed a scotoma adjacent to the macular region. This paracentral scotoma of optic neuritis remitted in another month. A right oculomotor nerve palsy lasting five weeks constituted the fourth attack. She is now in her fifth attack with symptoms of vertigo, slurred speech, double vision, staggering gait, and numbness in the right hand. Examination of eye movements reveals coarse horizontal nystagmus on lateral gaze, vertical nystagmus on gaze up and down. A rhythmic head tremor may also be seen. This represents damage to vestibular pathways. When she holds out the left hand, there is a flapping tremor at the wrist, intensified by performance of the finger-to-nose test. This is independent of whether the eyes are open or closed. It represents the intention tremor of cerebellar disease. The right hand exhibits searching movements of the fingers when the eyes are closed, and hesitancy on the finger-to-nose test, which is not present when the eyes are open, indicating position sense loss due to posterior column damage in the spinal cord. Her gait is weaving and lurching because of ataxia in the legs. She has bilateral ankle clonus. And Babinski signs as a result of pyramidal tract damage. This is a 41-year-old housewife and mother whose first symptoms occurred at age 30, when she developed weakness of the left leg. At 33, she had nystagmus and an ataxic gait. Since 35, both legs have become progressively weaker and stiffer. There have been no remissions. After 11 years, she shows the following. Testing of eye movements demonstrates bilateral internuclear ophthalmoplegia, with weakness of the adducting eye and jerking of the abducting eye on gaze to each side. There is a mild intention tremor of both hands, representing damage to the cerebellar system. Babinski signs are present bilaterally. Both legs show spasticity and weakness, the left more than the right. The patellar reflexes are hyperactive bilaterally. This spastic paraparesis with hyperactive and pathological reflexes denotes pyramidal tract damage in the spinal cord. This is a 41-year-old schoolteacher whose symptoms began at age 31 when he developed difficulty focusing his eyes with apparent movement of objects upon which he would fix. This represented nystagmus. It occurred intermittently for one year, then disappeared. At 33, he noted intermittent balance difficulty and weakness of the legs. At 34, incoordination of the hands and feet. At 36, his left leg and arm became weak and have remained so ever since. After ten years, he shows the following. There is mild ataxia of all four limbs on coordination testing. This is more prominent on the left. A slight head tremor occurs intermittently with effort. Spasticity in the left arm and leg is demonstrated when he walks. The left arm does not swing, and the left leg is used stiffly. [The patient walks around to demostrate the difference in the way each leg works.] The reflexes are hyperactive everywhere. [The patient's reflexes are tested in various parts of his body.] Hoffmann signs are present bilaterally. There are bilateral Babinski signs. This patient's findings indicate damage to the pyramidal tract and the cerebellar system bilaterally, most likely in the brain stem. Multiple sclerosis can be diagnosed with certainty only at autopsy when a picture of patchy demyelination in the central nervous system is seen. The glial scars or plaques may be seen and felt on the surface of the brain or spinal cord, as grayish-brown, firm, translucent spots. All of these pictures are from one patient, a 24-year-old lady with a four-year history of multiple sclerosis. Here on the pons is a large, brown, sclerotic plaque with two smaller lesions above it. These lesions represent a late stage in the pathological process, the demyelinated patch having been filled in by a scar of glial cell overgrowth. When cut sections of brain or cord are viewed, foci of demyelination appear as brown patches in the white matter. Cerebral foci have a predilection for the white matter immediately adjacent to the ventricles, especially posterior and inferior horns, and the white matter about the cortical and basal nuclear gray matter. The lesions in the cerebral hemisphere vary in size from that of a pinhead to several centimeters in diameter. Similarly, numerous areas of discoloration are found in the brain stem and cerebellum. Early in the plaque formation, there is perivascular inflammation. Then tissue is destroyed, myelin preponderantly. Myelin sheaths fragment into globules, fat is liberated, and macrophages ingest the fat. As the lesion ages, glial cells proliferate and produce fibrils, which give the older lesions. their sclerotic appearance and make them visible to the naked eye. Here on a freshly cut section of the spinal cord, only a faint area of discoloration is seen in the posterior columns. When stained for myelin, the lesions appear as pale foci within the darkly staining white matter. Many more plaques are now apparent. The lesions are often far in excess of what one would've expected from the patient's symptoms and signs during life. Thus, many plaques may be clinically silent, such as this demyelinated patch in the optic radiation of the cerebrum. In fact, there is evidence that a patient may go through life with pathological demyelination and yet have no clinical manifestations of multiple sclerosis. [Louis J. Rosner:] The only relatively consistent laboratory abnormalities in multiple sclerosis are spinal fluid changes. The spinal fluid may be entirely normal. This occurred in 40 percent of patients in the UCLA Multiple Sclerosis Clinic. An elevated gamma globulin content, over 13 percent of the total protein, was found in 58 percent. The colloidal gold curve was abnormal, the numbers adding up to ten or more in 36 percent. This test is an indirect measure of relative gamma globulin elevation. There was an elevated protein in 35 percent, an increased white cell count in 20 percent. With no pathognomonic laboratory test by which to confirm the diagnosis, the doctor must rely on his evaluation of the history and the physical examination. The clinical criteria for the diagnosis of multiple sclerosis are two. Number one, episodic course. Number two, multiple symptoms and signs pointing to optic nerve, brain stem, or spinal cord. Optic nerve manifestations are: decreased visual acuity, central scotoma, or paracentral, cecocentral, or peripheral on visual field examination and optic atrophy on ophthalmoscopic examination. Brain stem manifestations include nystagmus, the disconjugate gaze difficulty known as internuclear ophthalmoplegia, trigeminal neuralgia, facial sensory deficit, facial weakness, vertigo, dysarthria, dysphagia, emotional lability, and ataxia of the head, trunk, or limbs. Spinal cord manifestations consist of the electric sensations on flexing the neck known as Lhermitte's sign, tight band feelings around the trunk called girdle sensations, superficial or proprioceptor sensory deficit, spastic weakness with hyperactive and pathological reflexes, and neurogenic bladder disorder. Variations in the course and in the signs define four varieties of multiple sclerosis, the incidence of which is as follows. Number one, episodic disseminated, the classical type, 78 percent. Number two, progressive disseminated, 15 percent. Number three, episodic non-disseminated, five percent. Number four, progressive non-disseminated, two percent. Returning to our five patients, it will be seen that the first three represent the classical type of multiple sclerosis. The other two, atypical types. The college student in the first year of her illness had intermittent sensory symptoms with no objective signs. She was considered neurotic at that time. Many patients in the early stages of multiple sclerosis are given the diagnosis of psychoneurosis. The differential can be a difficult one. It is recommended that multiple sclerosis be diagnosed only if there are documented, objective abnormalities on examination. When this young lady developed the scotomas of optic neuritis and the Lhermitte's sign of spinal cord involvement, there was objective evidence of neurological disease and definite evidence of dissemination. The spinal fluid was normal, except for an elevated gamma globulin of 20 percent. Then the diagnosis of multiple sclerosis could be made. The excellent remission further confirmed this impression. The sales manager began with an attack suggesting both brain stem and spinal cord pathology. With complete remission of these symptoms, multiple sclerosis was suspected, but other remitting conditions occurring at the cervicomedullary junction region were still possible. After a two-year interval, he developed the disconjugate gaze difficulty of brain stem disease and the spinal cord sign of Lhermitte. Now, the diagnosis of multiple sclerosis was definite on the basis of episodic course and disseminated signs. A normal spinal fluid reinforced this conclusion. The pretty young clerk had only brain stem manifestations with her first attack. Multiple sclerosis could not be diagnosed at that time, as several other diseases can give a similar picture with remission. For example, cholesteatoma in the posterior fossa. In the second attack, there were sensory symptoms suggestive of spinal cord involvement in addition to the previous brain stem signs. There was still the possibility of a compressive lesion at the foramen magnum. Only with her third attack, when signs of optic neuritis occurred, was dissemination unequivocal. The diagnosis could not be made with assurance then, until this, the third year of her illness. The housewife has had a progressive, non-remitting course. This occurs in ten to 40 percent of MS patients in different large series. It is more common with an older age of onset and with a spinal cord type of onset. With time, it became apparent that this lady had damage in both the brain stem and spinal cord, as evidenced by the nystagmus and ataxia on the one hand and the spastic paraparesis on the other. The further development of bilateral internuclear ophthalmoplegia confirms the diagnosis of multiple sclerosis. The schoolteacher initially had only nystagmus, which remitted. After a one-year interval, intermittent ataxia appeared. Subsequently, the ataxia became constant, and he developed a spastic left hemiparesis with bilateral hyperreflexia and pathological reflexes. All signs could be localized to the brain stem. The early remissions suggested multiple sclerosis, but the absence of signs of dissemination necessitated the performance of many special tests. The entirely normal spinal fluid was further evidence of multiple sclerosis. However, in this type of case, the doctor should be especially cautious in his diagnosis. After the diagnosis, then what? Although multiple sclerosis has been known for almost 100 years, its etiology and its treatment are still unsettled. One important clue is the epidemiology of the disease. The geographical distribution is that of a low prevalence in tropical zones and a high prevalence in temperate and northern zones where studies have been made. Certain factors commonly found to precipitate exacerbations of the disease include physical exhaustion, infection, surgical procedures, and emotional crises. This patient's most recent exacerbation was in association with an emotional crisis. When an attack occurs, bed rest at the beginning may decrease the duration and the severity of the relapse. Symptomatic treatment includes the use of anti-vertigo drugs, muscle relaxants, antispasmodics for the bladder, and physical therapy. Most important of all is the psychological support that the doctor can render the patient by giving him attention, encouragement, and hope. Specific treatment for multiple sclerosis must await the discovery of the cause. Many theories have been proposed, but none has been proved. Research programs are now studying the problems of precipitants in the exacerbations of MS: geographical factors in its incidence, the nature and function of myelin, the significance of anti-myelin antibodies, and the experimental demyelinating disease of animals. The solution to multiple sclerosis will open the door to an understanding of many other neurological problems. Speaking for the National Multiple Sclerosis Society is Dr. Augustus S. Rose, Professor of Neurology at the University of California, Los Angeles. [Dr. Augustus S. Rose:] It is generally believed that patients derive encouragement and hope through the effort and programs of the National Multiple Sclerosis Society. Not many years ago, there was comparatively little scientific and public interest in the problem of multiple sclerosis. Today, it is recognized as the leading neurological disorder of our time and a major health problem. A large and diversified research program is being conducted in many laboratories throughout the world and with promising results. Through research and research fellowship training grants, the National Multiple Sclerosis Society supports fundamental, applied, and clinical studies considered to have relationship to the problem of multiple sclerosis and demyelination. Physicians and research persons at a postdoctoral level interested in these programs should communicate with the medical and research director of the National Multiple Sclerosis Society in New York City.

Contents

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.[3][4]. As of 2016, NMSS has raised $974 million for research[5].

Throughout two 2-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.[2]

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[3] 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[4] and not accepting applications.

Harry Weaver Neuroscience Scholarships

Harry Weaver, PhD, 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[5] and Collaborative Network Award grants. Both grants provide funding over multiple years to researchers and institutions in the international community.[6]

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,[7] the Weizmann Institute of Science,[8] University of Colorado Anschutz Medical Campus, University of Utah,[9] 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. One such grant was issued in 2005 to support Dr. Green of the University of California San Francisco Medical Center, whose research focused on the optical nerve and retina in people with MS[10]..

In 2016, the American Academy of Neuroscience Clinician Scientist Development Program[11] awarded $3 million to research and training programs with a focus on neuroscience. The Clinician Scientist Development Award in Multiple Sclerosis was awarded to Joseph Sabatino, MD, PhD at the University of California San Francisco.

Pilot Research Grants

High-risk pilot research programs[11] focus on cutting-edge ideas and methods which have not been tested which 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.

Criticism

Ruckus Sports, LLC vs. NMSS

On October 26, 2012, Ruckus Sports, LLC filed a legal suit against the National Multiple Sclerosis Society complaining that the organization committed Trademark Infringement for its use of "Muckruckus MS" as the name for its adventure race fundraising event. Ruckus Sports claimed that the Ruckus Trademark had been advertised and used for marketing their adventure charity races since September 2010. The NMSS filed a trademark application for "Muckruckus MS" on November 21, 2011.

The legal complaint, under Case No. 91207735-OPP, was filed in Massachusetts, claiming that the NMSS had committed one count of Federal Trademark Infringement Under 15 U.S.C. § 1125,[12] one count of Federal Unfair Competition,[13] one count of State Common Law Trademark Infringement under Massachusetts Law,[14] and one count of Unfair and Deceptive Trade Practices and Unfair Methods of Competition in Violation of Massachusetts General Law c. 93A.[15] According to the website PlainSite.com, there were 7 filings in the case, in which the NMSS filed a withdrawal of the Trademark application in January 2013. The website shows that the case was dismissed by the court on January 29, 2013.

References

  1. ^ "National Multiple Sclerosis Society on the Forbes The 100 Largest U.S. Charities List". Forbes. Retrieved 2017-05-12.
  2. ^ 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.
  3. ^ "List of Current Research Projects Funded by the National MS Society" (PDF). National Multiple Sclerosis Society. January 2017. Retrieved May 12, 2017.
  4. ^ [1]
  5. ^ [2]
  6. ^ "International Progressive MS Alliance". www.progressivemsalliance.org. Retrieved 2017-05-13.
  7. ^ "Mentor-Based Postdoctoral Fellowship in Rehabilitation Research | Research Funding". researchfunding.duke.edu. Retrieved 2017-05-13.
  8. ^ "National Multiple Sclerosis Society". www.weizmann.ac.il. Retrieved 2017-05-13.
  9. ^ "Home  - Office of Sponsored Projects - The University of Utah". osp.utah.edu. Retrieved 2017-05-13.
  10. ^ "AAN Foundation, National MS Society Partner for Clinician Scientist Development Award". www.aan.com. Retrieved 2017-05-13.
  11. ^ a b Neurology, American Academy of. "Announcing the 2016 American Academy of Neurology Research Program Recipients". www.prnewswire.com. Retrieved 2017-05-13.
  12. ^ "15 U.S.C. 1125 - False designations of origin, false descriptions, and dilution forbidden". www.gpo.gov. Retrieved 2017-05-24.
  13. ^ "15 U.S.C. 45 - Unfair methods of competition unlawful; prevention by Commission". www.gpo.gov. Retrieved 2017-05-24.
  14. ^ "Section 14". malegislature.gov. Retrieved 2017-05-24.
  15. ^ "Section 11". malegislature.gov. Retrieved 2017-05-24.

External links

This page was last edited on 4 October 2019, at 13:59
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