As of October, 2012 - we are pleased to be able to provide funds to help Dr. Salvatore DiMauro and Dr. Orhan Akman with Columbia University Medical Center, New York, NY to support their research on the specific and extremely rare genetic disorder which afflicted Keith. Hopefully, in the future, this research by Dr. DiMauro, Dr. Akman and others will be able to help treat individuals with this same condition. Dr. Akman has provide us with a brief update and included his research article in the Journal of Muscle Health - "Thanks to your support we are well aware of the RBCK1 mutations and related polyglucosan body disease. Your support gave us the opportunity to study the patient we have published. Unfortunately, there is no treatment for this genetic condition but there is a hope for the gene therapy which will be the subject of my next proposal." Please click here for Dr. Akman's 2017 Research Article in the Journal of Muscle Health:
Also, ongoing grants will be awarded to organizations providing support to those who are facing physical challenges:
Bridges, Nanuet NY provides advocacy and leadership in the creation and development of an accessible and integrated community for people with disablities, so that they may pursue lifestyles of their choice - and recognizes Keith each year with The Keith B. Hayes Memorial Spirit of Mentoring Award. This award is presented to a person who exemplifies outstanding achievement through the mentoring of people with disabilities on their path to employment and independence.
On Thursday, July 26, 2018 - the Keith B. Hayes Memorial Spirit of Mentoring Awardwas awarded to
The Children's Cardiomyopathy Foundation (CCF) is a national, non-profit organization focused on pediatric cardiomyopathy, a chronic disease of the heart muscle. CCF is dedicated to accelerating the search for cures while improving diagnosis, treatment, and quality of life for children affected by cardiomyopathy.
National Organization For Vehicle Accessibility (NOVA) - formerly The Ralph Braun Foundation - was created for a simple purpose: to assist those with mobility needs through education, information and product acquisition. Unfortunately, not everyone who needs mobility has the means to pay for it. Medicaid and Medicare sometimes offer funding for wheelchairs, but two wheels will only get you so far. Wheelchair accessible vans open the door (and lower the ramp) to the rest of the world.
The Wheelchair Foundation, CA is a non-profit organization with a goal to provide a free
wheelchair to every child, teen and adult worldwide who needs one, but has no means to acquire one.
We thank you and all who will benefit from the Keith B. Hayes Foundation thank you as well.
Sheila, Sadler, Brian, Adam and Galit Hayes
What CFOS-The Keith B. Hayes Foundation Supports:
The Keith B. Hayes Foundation | A component fund of the Community Foundation of Orange and Sullivan
The Community Foundation of Orange and Sullivan is a 501(c)(3) nonprofit organization.
All gifts are tax deductible under current tax laws.
The Community Foundation can be reached by calling 845-769-9393
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 genetic progressive muscular/skeletal disease and to continue his spirit of giving to others in need.
Grants awarded in 2018:
The Trustees of Columbia University (for research) - $15,000.00
BRIDGES - $1,000.00
The Children's Cardiomyopathy Foundation - $550.00
Wheelchair Foundation - $550.00
NOVA (formerly The Ralph Braun Foundation) - $600.00
Sign up with iGive.com - where a percentage of your online purchases will go to The Keith B. Hayes Foundation.
Check out these useful kitchen products that are 100% Made in the USA by Rada Cutlery where a percentage of your purchases can help to fund The Keith B. Hayes Foundation. - https://radafundraising.com/?rfsn=840211.be285
What Is Sept. 14th?
By Sheila Hayes
What is September 14th, but just a date?
And yet, for the past 11 years, it has sealed your fate.
You passed when God supposedly closes his Book
And he then on the second day, it was you, he took.
Such sudden death seems so unfair
Only at 20, is still too hard to bare.
And as each year rolls around this time in my heart
With sadness and tears that deeply smart
I hold onto who and what you stood for.
A brave and sensitive young man to your very core.
A hero and mentor who always tried to reach his goal
Then and now you live on with this memory in my soul.
Time has flown by so very fast these 11 years
It’s like you're still with me through my laughter and tears.
So what is September 14th, but just a date?
A reminder of you and not your passing away
But a remembrance of my son Keith with pride like any other day.