Pediatric MS
Help us raise $1,000,000 to research a preventative cure for pediatric MS!
Why it is important - and how YOU can help!
Pediatric multiple sclerosis accounts, currently, for up to 5% of all people diagnosed with MS in the United States. This translates to over 20,000 children under the age of 18 living with an under funded, under researched chronic incurable disease.
And those are the lucky ones.
Pediatric MS shouldn’t be a life sentence.
Conventional thinking among pediatric MS experts is the number of actual cases could be much higher. The reason, ignorance as a result of lack of training and proper education. Pediatric MS is a different disease than adult onset MS. Pediatric MS does not have the same geographic relationships, stress triggers or gender prevalences. Some studies suggest pediatric MS is more attributable to environmental stimulus, although the research is not conclusive on this.
- It is estimated that roughly 15,000 children in the United States alone have MS.
- Pediatric MS patients are more susceptible to seizures, brainstem, and cerebellar symptoms than adults.
- Misdiagnosis is the largest contributor to permanent debilitation in pediatric MS.
- MS in children can affect academic performance and relationships with family members and peers.
- Educating “first line” health care providers as to the existence of pediatric MS, and its inclusion in diagnostic considerations, is the most effective way to improve pediatric MSdisease outcomes and reduce the chances of permanent disability.
- Officially pediatric MS is diagnosed with the same standards as adult onset MS, two or more lesions (plaques) located in the brain, on the optic nerve or spinal cord separated in distance and time as defined by the 2010 McDonald Study.
- Pediatric MS almost always presents as relapse remitting MS yet pediatric MS can have 2-3 times the relapse rate.
- Unfortunately almost 30% of pediatric MS patients demonstrate cognitive impairment, preventing full cognitive development and deficits that will last a lifetime.
- Physical disability, however, progresses more slowly in pediatric MS patients, perhaps in part due to the remyelinating abilities of a growing body to repair damage to the myelin sheath, preventing axonal damage and impairment.
- Physical disability does ultimately present earlier in pediatric MS patients with permanent deficit versus adult onset MS patients, but why?
What will it take?
MS Cure Fund is partnering with the IPMSSG and has set an initial goal of $1,000,000 to fund the education of “first-line” healthcare providers through live conferences around the world and the establishment of a global internet repository of clinical guides to train and assist in the proper diagnosing of pediatric MS and demyelinating conditions of the central nervous system.
Additionally, we will be creating informational guides for patients and families on what they can do through diet, exercise and stress management to minimize the deficits of an MS diagnosis and learn to lead a healthy life BEYOND their MS diagnosis.
What can you do to help?
Donate! And donate again.
Reach out to those with significant means and tell them how money donated in support of researching improved treatments and ultimately a cure for MS, especially pediatric MS, will have an exponentially increased impact on the lives of hundreds of thousands of children either undiagnosed or misdiagnosed causing irreparable suffering and disability.
Whether it is $5, $5 a month or $50,000. Make your donation matter in the lives of children fighting this poorly understood and under researched disease.
Make a difference in a life, not just a child!
Thank you for your support!
The International Pediatric Multiple Sclerosis Study Group is a global network of adult and pediatric neurologists, basic scientists, clinicians, representatives of MS societies and other relevant professional organizations, whose unifying vision is to optimize worldwide healthcare, education and research in pediatric multiple sclerosis and other acquired inflammatory demyelinating disorders of the central nervous system.
Our Mission is to improve the care of children with multiple sclerosis and acquired demyelinating diseases worldwide, promoting clinical initiatives, education and research.
On the website there is information about multiple sclerosis and other acquired inflammatory demyelinating disorders of the central nervous system, research, educational events and other activities.
IPMSSG Steering Committee
Dr. Tanuja Chitnis (Chair)
Director of the Partners Pediatric MS Center at the Massachusetts General Hospital for Children, Associate Professor of Neurology, Harvard Medical School, Boston, USA
Member of Our Medical Advisory Board
Dr. Maria Pia Amato
Department NEUROFARBA, Section neurosciences, University of Florence, Italy
Dr. Rogier Q. Hintzen
Department of Neurology, MS Centre ErasMS, Neurology, Erasmus MC, Rotterdam, The Netherlands
Dr. Lauren B. Krupp
Pediatric Multiple Sclerosis Center, New York University, New York, USA
Dr. Daniela Pohl
Department of Neurology, Children’s Hospital of Eastern Ontario, University of Ottawa, Canada
Dr. Kevin Rostasy
Pediatric Neurology, Witten/Herdecke University, Children’s Hospital Datteln, Germany
Dr. Silvia Tenembaum
Department of Neurology, National Pediatric Hospital Dr. Juan P. Garrahan. Ciudad de Buenos Aires, Argentina
Dr. Evangeline Wassmer
Department of Neurology Department, Birmingham Children’s Hospital, UK
Dr. Emmanuelle Waubant
Pediatric MS Center, UCSF Benioff Children’s Hospital, and Neurology Department, UCSF, San Francisco, USA
Task Force
IPMSSG Operational Committee & Task Force Chairs
Education and Outreach
Dr. Evangeline Wassmer
Department of Neurology Department, Birmingham Children’s Hospital, UK
Clinical Care
Dr. Daniela Pohl
Department of Neurology, Children’s Hospital of Eastern Ontario, University of Ottawa, Canada
Clinical Trials Task Force
Dr. Emmanuelle Waubant
Pediatric MS Center, UCSF Benioff Children’s Hospital, Neurology Dept. San Francisco, USA
Research
Dr. Brenda Banwell
The Children’s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania, USA
- Diagnosis of pediatric MS is more challenging than in adults due to the commonality of symptoms and presentation with other childhood ailments.
- Officially pediatric MS is diagnosed with the same standards as adult onset MS, two or more lesions (plaques) located in the brain, on the optic nerve or spinal cord separated in distance and time as defined by the 2010 McDonald Study.
- 90% of pediatric MS cases present as relapse remitting MS and can have 2-3 times the relapse rate.
- Unfortunately almost 30% of pediatric MS patients demonstrate cognitive impairment, preventing full cognitive development and deficits that will last a lifetime.
- Physical disability, however, progresses more slowly in pediatric MS patients, perhaps in part due to the remyelinating abilities of a growing body to repair damage to the myelin sheath, preventing axonal damage and impairment.
In an age when we can splice DNA, clone animals and send camera laden spacecraft to photograph Pluto, why can we not even find a biomarker for multiple sclerosis, let alone develop truly effective ways to stop its progression, or prevent it? Wouldn’t it be nice if there was a simple answer to this simple question, but there’s not, yet!
The answer is out there, we just need to find it. How do we do that? Research and education. Funding of research in pediatric MS may hold the key to all MS onset, yet pediatric MS is the least funded area of study. We want to change that.
Recently the International Pediatric Multiple Sclerosis Study Group (IPMSSG) completed an incredible body of work that took over 60 neurologists, researchers and clinicians from 14 countries 13 YEARS to establish internationally recognized standards for the diagnosis and treatment of pediatric MS. This is a monumental achievement, and one to be lauded and praised. But as a patient advocacy organization, MS Cure Fund must ask, “How does this help a twelve year old be properly diagnosed in Haiti, Calcutta or China?” On its own, it doesn’t.
MS Cure Fund has made the commitment to work with the IPMSSG to see to it that the remarkable research they have dedicated careers to compiling is made available to everyone that treats pediatric patients. We see our role as patient advocates to make this body of work usable to the average ER physician or nurse, or primary care providers, the people who see pediatric MS patients first, before they know they have multiple sclerosis. We need to turn improper descriptions of s/he is just “clumsy”, or s/he “will grow out of it”, or “is just a little slow, s/he will catch up”. This is what happens in far too many cases of children who are eventually diagnosed with multiple sclerosis. These misdiagnosis cause unnecessary progression of a treatable disease resulting in the aforementioned high percentage of pediatric MS patients demonstrating cognitive impairment and earlier presentation of permanent motor disability later in life.
Beyond the obvious goals of reducing suffering and disability in children, is the possibility that pediatric MS may be a more “pure” form of the disease, giving unique insight into what MS is and why people are afflicted with this debilitating chronic illness of the central nervous system (CNS).
Pediatric MS is gender neutral, whereas adult onset MS afflicts 73% women versus 23% men, which suggests hormonal contributions.
But ask adult onset MS patients when they feel their MS symptoms began and nearly all will tell you of symptoms in their teens or earlier.