Advocating for the Pediatric Stroke Community

I never considered myself an advocate until I became a parent. It started when my oldest child almost died from a severe reaction to peanuts almost 30 years ago. I got involved with my local allergy group and shared our story. It was rewarding to have a community that understood my situation. Then came the birth of our third child in 1997. She suffered a perinatal stroke (a stroke that occurs in a baby anytime from 20 weeks of pregnancy to 28 days after birth), and I realized there wasn’t a local community for families in a similar situation. So, I used what I had learned from the food allergy group to create a support group for others in my local Chicago area. I dropped off flyers at hospitals and therapy clinics to find other parents. From that outreach, I was able to bring together about 30 families who met 4 to 6 times per year. We brought in speakers from the medical community, shared resources, and connected our kids. Unfortunately, I moved from Chicago in 2008, and the group could no longer stay together.

I tried to get used to the different environment of a new state. I tried to find a new healthcare team for my daughter and seek out new resources. It wasn’t easy, especially when I realized that medical treatment for kids with cerebral palsy (CP) varied from state to state. As I was figuring out all of this, I got a phone call from a pediatric neurologist in Canada whom I had developed a relationship with through a National Institutes of Health (NIH) clinical trial. She asked me if I would consider starting an organization to provide an “umbrella” group to pull all of the smaller pediatric stroke organizations together. At first, I didn’t know if I should get involved because I knew it would be a lot of work to create another organization, but my passion for advocacy again took hold. And that was how the International Alliance for Pediatric Stroke (IAPS) was created.

IAPS first started with a group of five board members. These board members were three parents and two pediatric neurologists. We received tax-exempt status in November 2012, and the website was launched in May 2013.

Since that time, we have expanded our impact on the pediatric stroke community by collaborating and partnering with large organizations such as the American Heart Association (AHA), the World Stroke Organization, and the International Pediatric Stroke Organization.

We’ve also worked with many hospitals and medical providers to provide education and resources for pediatric stroke. Additionally, we have also partnered with the Pediatric Stroke Network and Pediatric Epilepsy Surgery Alliance to provide support and resources for the global community.

Our resources for the community include our must-have guide, the Pediatric Stroke Family Tool Kit, which is available online in English and Spanish. However, we have mailed 3,900 complimentary printed copies to families who have requested them! Through our partnership with the AHA, we also have Fact Sheets and videos that can be shared and distributed in communities to raise awareness. We’ve got a very active IAPS Facebook page, with over 4,100 followers. You can also find us on Instagram (stroke.pediatric), LinkedIn (strokepediatric), and LinkTree (strokepediatric).

For the past 4 years, we have been honored to have a fellow stroke mom, Dana Morgan, design, print, and ship Pediatric Stroke Awareness shirts out to our community. Each of those years, Dana has collected the names of over 300 of our stroke heroes to print on the back of the shirts. It’s an incredible way to support IAPS and raise awareness in communities by wearing these shirts. It’s one of our biggest fundraisers.

In March of this year, we were able to provide a $20,000 grant to an institution for their Tolerability of transcranial direct current stimulation in Pediatric Stroke Survivors 2 (TOPSS 2) study. In 2026, we will be sending out a Request for Proposal for another $20,000 grant for research. I encourage families, researchers, and medical providers to sign up for our e-newsletter to stay up to date on our latest news for our community.

About the Author