Why are There so Many Questions?
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, let alone cure it? Wouldn’t it be nice if there was a simple answer to this simple question, but there’s not.
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.