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2019 Sponsors

Special Thank you to the Tirrell Room for Hosting our upcoming Event

 

 

 

Demandware

www.demandware.com

E.M. Duggan

 

Exelon Generation

www.exeloncorp.com

 

NESN

www.nesn.com

 

Worthwhile Life Foundation

www.worthwhilelife.org

 

Law offices of Kenneth J Difazio

www.difaziolawoffice.com

 

Tirrell Room

www.thetirrellroom.com

 

Alana Rose Foundation

www.thealanarosefoundation.org

 

Montilio's

www.montilios.com

 

Main Street

www.1400mainstreet.com

 

Diersch Flowers 

www.dierschflowers.com

 

Helfrich Brothers Boiler Works

www.hbbwinc.com

 

 

New England Photo Booth

www.nephotobooth.com

 

First Church in Weymouth

 

Weymouth Firefighters Union

 

Wentworth Lacrosse Team

www.wit.edu

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NKH Crusaders

My name is Kristin and I would like to tell you about our son Thomas who has Non-Ketotic Hyperglycinemia (NKH).NKH, or glycine encephalopathy (GCE) as it is sometimes called is a rare, devastating and incurable disease. It has a very wide spectrum of severity. I am told that most babies born with this disorder die shortly after birth. Before death, they go through a period of lethargy, weak crying, generalized hypotonia, and seizures. Many babies that are born with this disease die within the first 3 months of life. Sometimes a child survives for a few years, but with various life long issues.There are several forms of NKH.We are lucky that our son has been diagnosed with atypical NKH, which is the mildest form.   

No parent wants to learn that their child suffers from an incurable  disease. Because there are less than 500 children living with NKH worldwide, research for a cure is nearly non-existent. We want to to change that... we must change it. Since January, 2010 we have lost over 50 children to NKH. Our families want to do everything possible to ensure that their children have a fighting chance for a normal, healthy life. In order to fulfill this dream we need to fund research for more treatment options for our children.

 

WE NEED YOUR HELP!.