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.
How can it already be
17 years ago, you left our family?
In truth, you are frozen in time
20 years old whose body should’ve been in its prime.
Yet empathy and understanding for ones in need
Maturity and inner strength way past your age indeed.
You were my hero then and forever will be
And always in my heart sincerely.
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.
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.
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, and Dr. Rebecca L. Koch, PhD RDN is an Affiliate Faculty Member 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.
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. .
. 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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