The Keith B. Hayes Foundation

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.

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) -

"Dr. Priya S. Kishnani, MD is the Medical Director of the Duke University Y.T. and Alice Chen Pediatrics and Genetics

and Genomics Center, Dr. Rebecca L. Koch, PhD RDN is an Affiliate Faculty Member and Research Investigator, and Nisha Dalal is the Critical Research Coordinator of the Center. The mission of the Y.T.

and Alice Chen Pediatric Genetics and Genomics Research Center is to develop novel and effective

treatments and establish a better understanding of the pathophysiology and long-term complications of patients affected with genetic/metabolic disorders. The primary focus of the research is single gene disorders, including a clinical/translational core team to facilitate implementation of this goal. In support of this mission, our team is investigating new treatment strategies for glycogen storage diseases (GSDs) and related polyglucosan storage disorders, including GSD type IV, GSD XV, and RBCK1 deficiency. Our current treatment approaches siRNA therapy, gene therapy, gene editing, and combination therapy

approaches.

The GSD Translational Research Program – led by Dr. Kishnani and Dr. Koch – includes clinical natural

history studies, a biorepository storing tissue, blood, and urine from affected individuals, and a laboratory

investigating the natural history of diseases and the effect of novel treatments.

We are requesting funding up to $5,000 to support these ongoing research efforts. Specifically, any money

received from the foundation would be used towards investigating the impact of polyglucosan body

accumulation on the heart, muscle, and brain. We are doing this through investigations of tissues from

mouse models with polyglucosan accumulation, as well as from human biopsy and autopsy tissue stored in

our biorepository. We expect that these findings will improve our understanding of polyglucosan storage

disorders – including RBCK1 deficiency, GSD IV, and GSD XV. All findings from our work will be

detailed in a manuscript and published in a scientific journal for the medical and patient community to read."

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.

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.