1987 on February 2nd was your birth date,
A day today you'd be turning 38.
Now 17 years since you've been gone,
It's your loving memory I do hold on.
I will try to shed no tears,
For all your missed out years.
Instead celebrate who you were, that I vow,
A hero to me then and now.
Today, you’d be on February 2nd, 37
I’ll take a deep breath, shed a tear, then broadly smile,
No shared hug, just dear memories, while you’re now in Heaven.
You had soft blue/gray eyes, warm heart, empathy & your own individual style,
A physical body that was progressively letting you down
But your own inner strength, was the strongest constitution I’d ever know.
While hearing doctors’ unencouraging news amazingly never made you frown,
You’d let out your frustrations quiely playing your video games for an hour or so.
Now, fast forward to almost 17 years since our last goodbye on this Earth
With time passing so swiftly, almost like a windy day,
I will celebrate you, our cherished years shared since your birth
And, if you by chance,can hear my words, I love you forever, is all I can say.
The Keith B. Hayes Foundation was created to honor and memorialize Keith, who passed away on September 14th, 2007 at the age of 20 due to a polyglycosan storage disease which is a genetic progressive muscular/skeletal disease and to continue his spirit of giving to others in need.
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.
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.
Dr. Priya Kishnani, M.D, Rebecca Koch, PhD and Nisha Dalal
Research Lab
Having dinner on way home after awarding the Grant!
We paid a visit to Jawonio on July 2nd, 2025 - and visited with Diana Hess, Chief Communications and Development Officer, Molly Gibeau-Griffin, Foundation Director, Shedricka Edwards, Director, Day Habilitation Services and those who are taking advantage of the video game systems that are supported by The Keith B. Hayes Foundation. The Keith B. Hayes Foundation has been giving grants to contin
We are so pleased that The Keith B. Hayes Foundation along with the Wheel Chair Foundation have been able to donate over 250 wheelchairs to the Israeli non-profit, Yad Sarah, for their lending program to help those in need of mobility and independence. In addition, annual grants are continued to be awarded.
. Please view this short video from Yad Sarah with someone receiving one of the wheelchairs for a friend. Thank you to all our supporters to The Keith B. Hayes Foundation because without you this would not have been possible.
What would have been Keith's 35th Birthday - and recognizing how much he is remembered and that we can continue his legacy of giving.
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