Dear John, Kate, Jonathan and L P Coghlin,

Thanks for supporting this project. As the film above shows, for children like Rachel and other young people who develop MS it’s a scary and life changing diagnosis. That’s why we’ve funded this research to look ways of understanding which children who develop a demyelinating episode are likely to recover well and which are most at risk of developing multiple sclerosis.

The research project you helped support has worked with 223 cases and the findings indicate that roughly 1 in 100,000 children will develop a demyelinating episode a year and we have seen examples of such episodes in children from 1 to 16 years of age (and if you’re medically minded, there’s more detail below).

Understanding these episodes is vital for understanding what the future might hold for children and their families. We hope this research will also support the design of new international guidelines on the best way to diagnose and treat MS in children, so doctors can better cater to children’s physical, educational and emotional needs.

If the guidelines facilitate earlier, more accurate diagnosis and treatment, they could reduce children’s suffering significantly, as evidence in adults suggests the sooner treatment begins, the better it works.

So thank-you for making a difference, we really appreciate it.

Toby Tennant

Head of Relationship Fundraising

PS. For the more medically minded, here’s early information on the project findings:

“For every one child presenting with demyelination episodes which were consistent with acute disseminated encephalomyelitis (ADEM) there were at least two presenting with a clinically isolated syndrome (CIS). ADEM presents with drowsiness and more than one sign affecting the brain or spinal cord (e.g. loss of balance, weakness of arms and/or legs, numbness or tingling, speech disturbance, seizures, visual loss).

We think those presenting with CIS may have a higher risk of developing MS. Children with ADEM were younger than children with CIS. Also when analysing the MRI scans using new diagnostic criteria (called McDonald 2010- which have been recommended in children) on CIS cases; 8/85 (9.4%) fulfilled criteria for MS diagnosis.”

PPS. We hope the project you helped fund could be the beginning of an important long-term study, as the researchers hope to follow the children we’ve worked with in the study into adulthood. This could ultimately lead to better diagnostic tests and maybe even totally new treatments for this potentially progressive and debilitating illness.  So thanks again.