Submitted by: Mary Kay Ballasiotes, Founder/President of the International Alliance for Pediatric Stroke
Families who have been impacted by pediatric stroke understand that a stroke can happen at any age. Unfortunately, that isn’t something the general population, or even the general healthcare community, understands.
It’s time to change that. By working together, we can eliminate the phrase, “I didn’t know babies/children could have a stroke.”
The International Alliance for Pediatric Stroke (IAPS) is the umbrella organization to unite pediatric stroke communities worldwide to advance knowledge, awareness and research for pediatric stroke. By joining with other organizations such as Brendon’s Smile, Fight the Stroke, Canadian Pediatric Stroke Support Association, the American Heart Association/American Stroke Association (AHA/ASA), Asociación de Hemiparesia Infantil "Hemiweb” and the Pediatric Stroke Program at CHOP, we have been able to advance advocacy for this under-served population.
The list below highlights some of these groups’ achievements, and those currently in progress, to advance knowledge and provide education about pediatric stroke:
- “A Stroke Can Happen at Any Age” video series: Co-produced by IAPS and the AHA/ASA and featuring information from and an appearance by CHOP pediatric neurologist, Rebecca Ichord, MD.
- “Strokes Can Happen at Any Age” infographic: Co-produced by IAPS and the AHA/ASA. This is a wonderful fact sheet which is easily shared via this PDF. The AHA/ASA has also been kind enough to print the flyers in local affiliates for use at stroke fairs or awareness events. Check with your local AHA office if you need multiple copies of the infographic.
- Through funding from Gabrielle’s Ride, IAPS board member Nikki Ide has provided pediatric sessions at the International Stroke Conference, community level education for GPs, Pediatricians, Emergency Medicine doctors, and cardiac/stroke discussions with Dr. Rebecca Ichord.
- TEDGlobal talk with Francesca Fedeli and Robert D’Angelo: IAPS board member Francesca Fedeli was awarded the Eisenhower Fellowship to advance development of projects aimed at lowering the incidence of brain stroke and finding new applications for pediatric physical and cognitive rehabilitation. She and her husband Roberto D’Angelo have presented their TED presentation at many events. Francesca has also written a book about her son’s journey, which is available in Italian. She is currently looking for a U.S. publisher.
- IAPS board member Mary Kay Ballasiotes is currently working with the University of North Carolina Hospital in Chapel Hill, NC to produce pediatric stroke education materials. There will be a booklet, pamphlet and an education module for healthcare providers. It is scheduled to be completed by May 31, 2015 and will available electronically as well as in hard copy prints.