Awareness and understanding of pediatric MS is a critical need in much of the world
Boston, Massachusetts – March 31, 2016 – The International Pediatric Multiple Sclerosis Study Group (IPMSSG) has formalized a three-year partnership with MS Cure Fund, Inc., a Boston based 501(c)3 nonprofit patient advocacy organization for people living with multiple sclerosis.
“This partnership is a natural one for MS Cure Fund,” said Susan Strachan, MS Cure Fund President and Founder. “We started the charity just over 10 years ago to be a local resource to people living with MS in the New England area. In 2014 we expanded to provide patient education across the United States. Now we have the opportunity to change how the world sees and treats pediatric MS.”
The unifying vision of the IPMSSG is to optimize worldwide care, education and research in pediatric multiple sclerosis (pMS) and other acquired inflammatory demyelinating disorders of the central nervous system (CNS). “For the past 13 years, over 60 neurologists, researchers and clinicians from 14 countries have worked and collaborated to establish standards for the diagnosing and treatment of pediatric MS,” shared Dr. Tanuja Chitnis, Director of the Pediatric MS Center at Massachusetts General Hospital, Associate Professor of Neurology at Harvard Medical School and current Chair of the IPMSSG Steering Committee. She continued: “In 2007 the IPMSSG published the first installment of comprehensive review and guideline papers on pMS. However, it took another 7 years of research and collaboration to meet the burden of acceptable standards.”
Susan and Dr. Chitnis first discussed the importance of creating an update to the IPMSSG guidelines while both were attending the MS Boston 2014 joint meeting of the European Centers for the Treatment and Research in MS (ECTRIMS) and the America’s Centers for the Treatment and Research in MS (ACTRIMS) which brought together over 9000 doctors, researchers, pharmaceutical representatives and advocacy organizations from 91 countries to discuss all things MS. At that meeting the IPMSSG asked, and MS Cure Fund agreed, to fund the publishing of this amazing body of work, due to be released in the summer of 2016.
MS Cure Fund will work with the IPMSSG to create educational opportunities for “first line” healthcare providers such as ER physicians and nurses and primary care providers. “These are the people in the healthcare system that see pediatric patients first, often not diagnosing or misdiagnosing children and adolescents, allowing for untreated disease progression, increased opportunity for disability and decreased quality of life,” added Chitnis.
Initially this work will take the form of translation of the standards into five languages from English. The five are Chinese, Spanish, Hindi, Russian and Arabic. From these, clinical treatment guides for providers, and informational guides for patients/families, will be created and translated into a current plan of 25 additional languages covering 78% of the world’s population. To introduce these guides and educational tools, MS Cure Fund will work with international professional and advocacy organizations to create live conferences in Russia, China, India, the Middle East and Latin America, providing global access to the top researchers and clinicians in pediatric MS.
To support this effort, MS Cure Fund is establishing a USD $1,000,000 goal to translate, educate and disseminate information on pediatric multiple sclerosis through live, printed and internet based interactions worldwide. For more information on this effort please go to www.mscurefund.org/pediatricMS.
About MS Cure Fund, Inc.
MS CURE FUND is a national nonprofit organization dedicated to:
- Increasing awareness and understanding of Multiple Sclerosis and its debilitating symptoms
- Providing help and information to newly diagnosed patients
- Conducting educational programs & seminars for patients, along with MS neurologist led forums for support & case discussion
- Raising much needed funds going directly to the scientists and clinicians researching a cure for MS
MS Cure Fund, Inc. is located at 20 Park Plaza, Suite 400, Boston, Massachusetts, 02116. The phone number is 617-375-7900. The web address is www.mscurefund.org.