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THIS CAN’T BE MS - OR IS IT?!

FIRST NETWORK OF PEDIATRIC MS CENTERS OF EXCELLENCE ARE ESTABLISHED ACROSS THE COUNTRY
$13.5 Million Awarded by the National Multiple Sclerosis Society for Six Pediatric MS Centers of Excellence to Treat and Study Childhood MS

ATLANTA, November 11, 2005 –Although multiple sclerosis is considered an “adult disease” and is the most common neurological disease affecting young to middle-aged adults, better diagnostic tools now reveal that there are approximately 8,000-10,000 children who have multiple sclerosis, and another 10,000-15,000 who have experienced what may be symptoms of MS. This disease is more difficult to diagnose in children and many pediatricians are not familiar with MS, particularly since they are not expecting to see it in children. Then even when diagnosed, consensus guidelines for treatment exist only in relationship to adult MS, with none for children, largely again because information about MS in children is so scarce.

As the leading private funder of MS research, and because of the critical need to better understand childhood MS, the National MS Society is establishing the first-of-its kind network of Pediatric MS Centers of Excellence. These centers will set the standard for pediatric MS care and offer optimal medical and psychosocial support to children and their families. The centers will work with children under 18 who have MS and other central nervous system demyelinating diseases.

The Society announced the establishment of the support for these first six centers at its annual conference today in Atlanta before a group of over 1,000 Society volunteers, staff leadership and people living with MS.

Regional Pediatric MS Centers of Excellence Set the Framework and Direction for Pediatric MS Care and Research

Over the next five years, the Society will invest $13.5 million in implementing these Pediatric MS Centers of Excellence. The Society’s commitment to launch and fund these centers is part of its Promise 2010 Initiative to support targeted areas of research and patient care that hold great potential in the fight to end the devastating effects of MS, but which have so far been under-explored.

The centers will be established in geographically diverse regions around the country to treat as many children as possible and will set the standard for comprehensive care for pediatric MS, including medical diagnosis and treatment, rehabilitation, psycho-social issues and educational components. The centers will also create the framework to conduct critical research – both to understand childhood MS and to unlock the mysteries of MS in adults. “One of the many challenges with pediatric MS is that because the disease typically strikes adults, it may not be on the pediatrician’s or even a pediatric neurologist’s radar screen as a possible diagnosis when a child is experiencing MS-like symptoms,” said Dr. John Richert, Vice President, Research and Clinical Programs for the National MS Society. “By establishing a network of Pediatric MS Centers of Excellence, our plan is to give the medical community the tools they need to help identify and treat MS early on. We also want to give families a range of resources that have not been available previously to help them cope with the daily impact that MS has on their lives.”

While the primary focus will be to develop a national model for pediatric MS treatment programs, experts also consider research into childhood MS as a way of gaining more insight into the basic causes of MS, which are believed to be a combination of genetic factors and environmental triggers. “It is known that there is a genetic component in MS and there are many genes that can make one susceptible to the disease,” said Dr. Lauren Krupp, Director of the National Pediatric MS Center at the Stony Brook University Hospital, and one of the center awardees. “It might be easier to study both the genetic components and identify environmental triggers inherent in MS within a child because they have had much less exposure to outside influences than adults so there might be less environmental ‘noise’ to sift through.”

Nationwide network to give treatment access to as many families as possible Centers will be established in geographically diverse areas so that they can serve as regional centers for as many children and families living with MS as possible. They will be staffed by teams of pediatric and adult MS experts who lead the field in MS diagnosis and treatment. The Center locations are:

• Center for Pediatric-Onset Demyelinating Disease at the Children’s Hospital of Alabama, University of Alabama at Birmingham – Project director: Jayne Ness, MD, PhD;

• Jacobs Center for Pediatric MS, Jacobs Neurological Institute, State University of New York at Buffalo – Project director: Bianca Weinstock-Guttman, MD;

• Pediatric MS Clinic at Mayo Clinic Rochester, Minnesota – Co-project directors Nancy L. Kuntz, MD & Moses Rodriguez, MD;

• National Pediatric MS Center at Stony Brook University Hospital, Long Island – Project director: Lauren Krupp, MD;

• Partners Pediatric MS Center at the Massachusetts General Hospital for Children in Boston – Project director: Tanuja Chitnis, MD;

• University of California, San Francisco Regional Pediatric MS Center – Project director Emmanuelle Waubant, MD, PhD.

“We chose these sites to be our first Pediatric MS Centers of Excellence because we believe they will offer the greatest number of families access to essential resources. What stands out at each of these centers is the caliber of the project directors and their staffs. They are all top notch and will treat each child with the individualized approach needed to best deal with this complicated disease so we can learn why these children are getting MS and stop it in its tracks,” Dr. Richert continued.

The centers have committed to sharing critical resources and collecting standardized data so that each family at every center will get the same access and information. Center directors will meet in person two-to-four times annually to discuss advancements and share best practices.

Pediatric MS: Diagnosis and Treatment

Today, childhood MS is treated in the same way as adult MS, with an eye toward adjusting dosages to this patient population’s size and weight. In addition to a range of interventions to treat the various symptoms that can occur, there are four injectable disease-modifying drugs that have been shown to alter the course of the disease. The medications have been tested and approved for use by adults, but have not been systematically studied for children. Currently, there are no consensus guidelines for diagnosing or treating children and adolescents.

Neurologists who treat children with MS have reported, however, that many children develop cognitive difficulties that may impact academic achievement. Some studies also indicate that more young girls are diagnosed with MS than young boys, mirroring a gender imbalance also seen in adults with the disease. “However, one of the first areas that needs to be explored is the anecdotal evidence suggesting that the profile of children with MS is inverse to the adult profile, which is typically two-to-one Caucasian women to men. The children with MS who we are seeing are more frequently from minority populations – African American, Latino, Asian, Middle-Eastern,” advises Dr. Krupp.

The centers will work towards establishing diagnosis and treatment guidelines that will develop standards and help improve disease management strategies for this under 18 population. “Not only do we have to educate pediatricians, neurologists and the public that pediatric MS exists,” says Deborah Hertz, Director of Medical Programs at the Society and project manager, “in many cases we have to even update our diagnostic software because often when physicians enter an MS diagnosis in the their computers for a pre-teen, they receive an error message to the effect that “This can’t be MS!”

Promise: 2010 – giving people with MS a future to look forward to rather than a past to look back upon

The establishment of the nation’s first network of Pediatric MS Centers of Excellence is one of the four key goals of the Society’s Promise: 2010 initiative. To encourage innovative research into highly promising areas and to improve MS medical care, the National MS Society launched Promise: 2010, a nationwide campaign to raise at least $30 million by 2010 for targeted areas of research and patient care that hold great potential in the fight to end the devastating effects of MS but which have so far been under-explored.

In addition to the establishment of Pediatric MS Centers of Excellence, the Society has awarded $15.6 million for research aimed at protecting the nervous system, reversing neurological damage and restoring function in people with multiple sclerosis (these are the largest awards ever made for this type of study). In addition, funds will go towards the MS Lesion Project, an international pathology study seeking to map and understand the different forms of MS damage seen in the brain in order to develop better ways of treating people with MS; and the Sonya Slifka Longitudinal MS Study, a nationwide database to examine the impact of MS on people’s lives. This $30 million-plus commitment is over and above the Society’s annual commitment of more than $35 million devoted to over 300 MS research projects occurring around the world.

To learn more about the Promise: 2010 initiatives visit nationalmssociety.org/promise2010.asp; to support Promise: 2010, call 1-800-FIGHTMS. To learn more about pediatric MS, visit: nationalmssociety.org/Pediatric_and_Childhood.asp.

About Multiple Sclerosis

Every hour in the United States, someone new receives that frightening diagnosis: multiple sclerosis. MS is an unpredictable, often disabling disease of the central nervous system. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are giving hope to those affected by the disease. Most people with MS are diagnosed between the ages of 20 and 50, with more than twice as many women as men contracting the disease. MS affects more than 400,000 people in the U.S., and 2.5 million worldwide.

About The National MS Society

The mission of the National MS Society is to end the devastating effects of MS. Through its home office and 50-state network of chapters, the Society funds more MS research, offers more services to people with MS, provides more professional education, and advances more MS advocacy efforts than any other MS organization in the world. This is why we’re here.

Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional and contact the National MS Society at www.nationalmssociety.org or 1-800-FIGHT-MS to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.

CONTACT: Becca Kornfeld 917-558-3391/ or Arney Rosenblat 917-613-5711/