The first annual World Pediatric Stroke Awareness Week was May 3 – 9, 2014. Many thanks to everyone who participated to make this a huge success. Brendon’s Smile, the International Alliance for Pediatric Stroke, the American Heart Association, the American Stroke Association, Reaching for the Stars, Fight the Stroke and many other groups from around the world joined together to increase awareness that babies, children and even the unborn can suffer strokes.
The International Alliance for Pediatric Stroke has partnered with the American Heart Association and the American Stroke Association to co-produce a pediatric stroke awareness video, “A Stroke Can Happen at Any Age.” The video highlights a survivor of both perinatal and childhood stroke, Alex Newton. Some of you may remember Alex’s mother Claudia’s fundraising event a few years ago. This fall, Claudia will be spearheading a second fundraising event for CHOP. Rebecca Ichord, MD, director of CHOP’s Pediatric Stroke Program, provided the medical expertise for the recently released video. We need your help to make sure this video is distributed far and wide to ensure that the general population, as well as the medical community, understands that strokes can strike at any age.
The Patient-Centered Outcomes Research Institute (PCORI) offers an opportunity for researchers, patients and medical specialists working together to apply for funding for research. PCORI is funded partially through the Affordable Care Act and will be awarding contracts for research through 2019. Panels of reviewers will assess each application to make sure patients are involved at all levels of the research and that the results of the study will impact the health of individuals and populations. We would like to encourage researchers who have ideas for a project pertaining to pediatric stroke to apply. Researchers need to include patients/ families/caregivers, so this is a great opportunity for CHOP families to work hand in hand with researchers. Please visit the PCORI website for more information, or contact Mary Kay Ballasiotes, co-founder/president of the International Alliance for Pediatric Stroke. Mary Kay is a standing panel reviewer/patient for PCORI and can help guide applicants on how to involve patients/caregivers to exert meaningful influence on the design and conduct of the research.