Life After Stroke: Resources

In honor of Pediatric Stroke Awareness Month 2018, we want to ensure that the awareness and education grows for pediatric stroke. Whether you are a healthcare provider, an impacted family or someone just learning of the possibility of stroke among children, we encourage you to increase your knowledge of pediatric stroke by reading and sharing these resources and information.

Among the resources listed below, you will find medically vetted information designed to be downloaded and shared on social media, via email or printed. By taking a moment to learn and share the information, you will be making an impact that can lead to making a difference for the pediatric population.


International Pediatric Stroke Study

The International Pediatric Stroke Study (IPSS) performs collaborative research aimed at understanding, preventing and improving outcomes in pediatric stroke, and to promote professional education, support families with pediatric stroke members, and support public education.

The IPSS currently includes over 150 participating research staff, investigators and collaborators from 55 active centers that have enrolled over 5600 children with stroke. Establishing this network has led to successful competitions for millions of dollars in research grants to fund the execution of the multicenter research studies and clinical trials required to advance knowledge and improve outcomes.

Coming soon: a list of the IPSS collaborators, former and active


Stroke Fact Sheets 

These fact sheets were produced in partnership by the American Stroke Association and the International Alliance for Pediatric Stroke

Infant Stroke Fact Sheet

Infant Stroke Fact Sheet (Spanish)

 

 

 

 

 

 

 

 

 

Childhood Stroke Fact Sheet

Childhood Stroke Fact Sheet (Spanish)

 

 

 

 

 

 

 

 

 

 


Carolina Acute Stroke Training (CAST)

The Carolina Acute Stroke Training (CAST) program was developed by the UNC Stroke Team under the leadership of Susan Wilson RN, MSN, C-ANP. Learners for CAST include registered nurses, first responders, pharmacists, allied health professionals, and a wide variety of persons with different backgrounds, education and experience. CAST has a Pediatric Stroke Module (Module 9) with a lot of information that some parents will also find helpful.


Pediatric Stroke Rehabilitation: An Interprofessional and Collaborative Approach

The book is designed to enhance the practice of all health care providers, enrich discussion, and emphasize the interdisciplinary nature of managing best outcomes for a child who has had a stroke. Evidence-based practice is threaded throughout the text with an emphasis on recovery vs. compensation, goal achievement, and outcome measurement. (include a picture of the cover of the book)

Parents, caregivers and family members of children who have had a stroke will also find this book to be a valuable resource. The publishers, SLACK Inc., have agreed to offer a discount to families who would like to purchase the book. Here are the details:

URL: www.healio.com/books/pedstroke 

Promo Code: PSR17

The promo code will take 20% off the retail price. The promo code is only valid on the healio website or by calling the customer service department at 1-800-257-8290.


The “Mirrorable” Project

Francesca Fedeli, founder of Fight the Stroke and an International Alliance for Pediatric Stroke board member along with her husband Roberto D’Angelo have been working with scientists, researchers and physicians on development of the “Mirrorable” Project. Mirrorable (patent pending) is an interactive platform that allows a new model of rehabilitation therapy at home, specially designed to meet the needs of children who have suffered brain damage at a very early stage of their lives, with motor level impacts. The scientific principle on which it is based is the ability to stimulate the plasticity of the motor system by activating the mechanism of mirror neurons, just watching the video-stories and exercising with other children with similar needs. You can get more information about this promising rehabilitation therapy on the Frequently Asked Questions page.


The Diagnosis and Acute Management of Childhood Stroke, Clinical Guideline 2017

This clinical guideline was developed in response to the needs of professionals and families for a consistent approach to childhood stroke in Australia. It includes more than 60 recommendations to help emergency staff and paediatricians in diagnosing and managing children with stroke upon arrival to hospital.

The guideline was developed by the Australian Childhood Stroke Advisory Committee (ACSAC), comprising Australia’s leading clinical experts, scientists and guideline developers, representing all of Australia’s leading tertiary paediatric centres.


Pediatric Stroke Warriors Family Toolkit

The Pediatric Stroke Warriors Family Toolkit is intended to give families guidance on how to navigate this journey after their child has suffered a stroke. This toolkit has been made accessible online to download, however, hard copies are available at no charge for individuals, physicians and hospitals. The information is applicable to both impacted families and medical professionals. It is intended to give guidance on how to navigate the journey after a child has suffered a stroke.

Please contact Pediatric Stroke Warriors at support@pediatricstrokewarriors.org for more information.

 


Camps and Organizations

Please visit the Camps page on our IAPS website to view a list of some of the summer CIMT camps. If you have a camp or know about one that is not on the list, please contact us at info@iapediatricstroke.org so we can add it!

We have listed many of the pediatric stroke local and online organizations from around the world. There may be one in your area! If you have an organization that you would like included, please let us know at info@iapediatricstroke.org.