About the Research

Our primary areas of research include:

Gate studies in a state-of-the-art gate lab, researching the impacts of spinal stimulation to improve function & prove the demand for advanced custom bracing. The team is also driving a program leveraging AI technology to make these gate studies accessible from anywhere, even your phone.

Bladder research to understand the measurable impacts of spinal stimulation on bladder function and ways to enhance bowl / bladder control for people living with spina bifida.

Institutional Collaboration is at it's heart, the most important work of the Harpey K Foundation. The organization is empowered through private fundraising to encourage major institutions to work together. For 3 years now, the foundation has been driving research in CODA, an AI program that takes an incredible amount of patient data from spina bifida patients all over the world and puts it in the palm of the doctors hand. The conversation at diagnosis changes when a doctors has thousands of patient data and the predictions on outcomes become far more clear for patients and families. Perhaps reducing the rate that over 65% of spina bifida diagnosis are terminated in utero. This can save lives and support families - this is our why.

On a quarterly basis, our teams join for a symposium to collaborate and enhance each others work. Annually, we all get together to present the years findings and determine ways the institutions can leverage their expertise to drive the research further, faster.

Frequently Asked Questions

  • Spina bifida is a birth defect in which the area of the spinal column doesn’t form properly, leaving a section of the spina cord and spinal nerves exposed through an opening in the back. The opening results in paralysis and nerve damage at and below the area of the open lesion.

  • Spina bifida occurs in 1 per 2,000 births in the United Sates and is the most common central nervous system birth defect. Around 1,500 babies are born with spina bifida in the U.S. each year. Diagnosis rate is much greater, but unfortunately 67% of spina bifida babies are terminated due to the lack of education and understanding of this condition.

  • Harpey K is a nickname, founders Jesse and Patrick Kenning, call their four year old daughter, Harper. She was diagnosed with spina bifida at their 20 week anatomy scan, but Harper is so much more than a diagnosis. She is super smart, silly, strong-willed, and considerate of everyone she knows and loves! It was in that spirit that they founded this foundation to provide better outcomes for other families receiving a spina bifida diagnosis.

Meet the Team

  • Jesse & Patrick Kenning

    FOUNDERS HARPERS PARENTS

  • Dr. Greg Heuer

    DIRECTOR PRENATAL & NEONATAL NEUROSURGERY, CHILDREN’S HOSPITAL PHILADELPHIA

  • Dr. Mike Boninger

    DIRECTOR, REHAB NEURAL ENGINEERING LAB, UNIVERSITY OF PITTSBURGH

  • Dr. Lee Fisher, PhD

    ASSOCIATE PROFESSOR, PHYSICAL MEDICINE AND REHAB, UNIVERSITY OF PITTSBURGH

  • Dr. Adam Kundishora

    PEDIATRIC NEUROSURGEON, CHILDREN’S HOSPITAL PHILADELPHIA

  • Dr. Rob Gaunt, PhD

    ASSOCIATE PROFESSOR, PHYSICAL MEDICINE AND REHAB, UNIVERSITY OF PITTSBURGH

  • Dr. Bailey Petersen PhD, DPT

    ASSISTANT PROFESSOR, PHYSICAL MEDICINE AND REHAB, UNIVERSITY OF PITTSBURGH

  • Dr. Jason Batavia

    PEDIATRIC UROLOGIST, CHILDREN’S HOSPITAL OF PHILADELPHIA

Contact us

Interested in working together?

There are a few ways we would love to get you involved:

  1. Attend our annual event! There is nothing better than seeing your face in person and we would love to have you. Visit our tournament page to get signed up.

  2. Send a direct donation to the foundation through the "support us" button on the homepage. Any amount, large or small, is much appreciated and can be followed up by a tax deduction form. 

  3. Purchase some Harpey K Foundation swag and show support on event day and beyond!

  4. Have any resources you can share? We would love help acquiring auction items, support with events, or anything else you can share to support our dinner and event!

  5. Share your story! We love to hear from other families that can benefit from the work we are doing to drive our mission forward. At the end of the day, that’s what this is all about! Connect with us on instagram , fill out this form, or email us directly at info@harpeyk.com

Fill out some info and we will be in touch shortly. We can’t wait to hear from you!