Update on Pediatric Strokeby Mary Kay Ballasiotes
Every year since 2001, the Neurobiology of Disease in Children (NDC) hosts a symposium on a topic in the field of children's neurological diseases. The 2010 symposium, held on October 13 in Providence, Rhode Island, was on Cerebrovascular Disease. I was honored to be in attendance with a large group of child neurologists, accomplished investigators, young investigators and the National Institute of Health (NIH) representatives. The topic of pediatric stroke this year brought in the largest attendance ever, which was very inspiring to me as a mother of a young stroke survivor.
The purpose of the symposium is to identify the future directions and research priorities on the topic selected. The principal investigator of the conference, Dr. Bernard L. Maria from the Medical College of Georgia, got a head start on advancing pediatric education by inviting my daughter Michelle Ballasiotes and me to help him do presentations over the summer. We assisted in educating pediatricians at a convention in Kiawah Island, SC and residents at Grand Rounds at MCG on how to identify babies that may have suffered a stroke at or before birth.
Our first request for a peer visit came in an email from our website that was sent to us from Maureen, the wife of a stroke survivor. Her husband Tom was a 40 year-old man who had his stroke last fall, and was very depressed. He was an active, working father, and now he was relegated to a wheelchair, his left side being pretty much ineffective.
Also meeting in Rhode Island on October 12, was the International Pediatric Stroke Study (IPSS). The IPSS was initiated in 2002 by a group of physicians and scientists (primarily pediatric neurologists) from Canada, the US, and the UK interested in increasing the understanding of neonatal and childhood stroke. The first major initiative of this group was to obtain the 2002 Child Neurology Society and Child Neurology Foundation (CNS/CNF) Multicenter Clinical Research Grant for a proposal entitled: "Towards the Establishment of Standards of Practice and the Initiation of Multi-Center, Multi-National Clinical Trials for Neonates and Children with Stroke."
The aim of the IPSS so far has been to develop a set of standardized protocols enabling standardized data collection on the diagnosis, investigation, treatment and outcome assessment of children with stroke. Over the years, they have realized there is a need for advocacy for patients and families of young stroke survivors, so they will soon be reaching out globally to coordinate efforts to promote awareness and education for pediatric stroke. I was honored to be selected to help the IPSS with their endeavor. To see a list of the co-investigators of the IPSS, click here.
The interest shown by the NDC and IPSS to move pediatric stroke to the forefront is very encouraging. Hopefully, the momentum will keep increasing and we will see more research, treatment options and advocacy for these young survivors.
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