The Keith B. Hayes Foundation

Beginning in 2025. The Keith B. Hayes Foundation is pleased to award a Grant to Duke University which is doing research as regards to glycogen storage diseases (pediatric) -

Meet The Research Team

At  the Duke University Y.T. and Alice Chen Pediatrics and Genetics and  Genomics Center, we’re dedicated to improving the lives of children and  families affected by rare genetic metabolic disorders.

Dr.  Priya Kishnani, our Medical Director, and Dr. Rebecca Koch, Affiliate  Faculty Member, lead a team focused on understanding and treating  conditions that stem from changes in a single gene — specifically,  glycogen storage diseases (GSDs) and related disorders where the body  stores an abnormal form of glycogen called polyglucosan. This includes  GSD type IV, GSD XV, and RBCK1 deficiency.

Our  work includes long-term studies that follow patients over time to  better understand how these rare diseases progress. Using this  knowledge, we aim to develop and test new treatments — like therapies  that help reduce harmful substance buildup in the body.

Together,  our goal is to bring research directly to patient care, offering hope  and better outcomes for children and families affected by these  challenging conditions.

From Duke -  "We  recently completed a manuscript that was developed in part by your  donation last year. It is a specialized method to better quantify  polyglucosan inclusions in tissues, which is applicable to RBCK1  deficiency as well as other polyglucosan storage disorders. We are using  this method as we investigate therapies to reduce polyglucosan build  up. We will let you know when the manuscript is officially published!" 

The Children's Cardiomyopathy Foundation was founded by Lisa Yue who lost 2 young sons due to cardiomyopathy.  Keith at 20 1/2 years of age passed away due to this same affliction.  The Keith B. Hayes Foundation supports this non-profit's hope in saving children's lives.

JAWONIO, a disability and service organization in Rockland County, NY is our newest Grantee.  The Keith B. Hayes Foundation donated a video game system that is helping adult clients with social and communicative skills.  Keith often played video games to relieve his frustration to his dealing with his physical deterioration. 

Partnering with the Wheelchair Foundation, Danville, CA, in 2021, The Keith B. Hayes Foundation was able to have a container of over 250 wheelchairs delivered to Yad Sarah to be distributed to their centers throughout Israel.  .Keith was wheelchair bound for the last 1 1/2 years of his life.

For the past 16 Years and up until this year, 2025, The Keith B. Hayes Foundation has been supporting research first headed by Dr. Dalvatore DiMauro and then spearheaded by Hasan Orhan Akman, PhD, Associate Professor of Neurology at Columbia University Medical Center for 13 years.  From a past muscle biopsy, it was determined that Keith had a rare polyglygogen storage disease.  Dr. Akman's research had clinical trials regarding gene therapy for the RBCK1 deficiency which Keith was later diagnosed with.  Dr. Akman has moved on to a new chapter in his career, and our support will now be directed to the research team at Duke University which is working on glycogen storage diseases which is more applicable to what afflicted Keith.

To learn more about Dr. Hasan Orhan Akman's Research - "Developing Gene Therapy for RBCK1 Deficiency" - and his grant request, scan the QR code above.