news and information

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WELCOME!  

We are so glad you are here!  This site is designed to raise awareness and to provide basic information  regarding NKH and ways to support our children and our mission to find a cure and better treatment options for this devastating illness.  We will utilize our Brodyn’s Friends Facebook page for all day to day activities, so please like and follow us there.   

Yearly events to watch out for:        

• NKH Awareness Day May 2nd
• NKH Remembrance Day November 2nd   

Find us on Facebook

$14 For 14 was a huge success! $4000 was raised and that will all go to research.  Thank you for helping us celebrate Brodyn‘s birthday and NKH Awareness Day.  

In other Big News, because of your generosity, the Brodyn‘s Friends Foundation is able to provide a $7500 Match to The University of Notre Dame!   

NKH Crusaders, The Lucas John Foundation,  The Nora Jane Almany Foundation , The John Thomas Foundation, Owen Sarb Fund (ND-NKH), The Jacqueline Kirby  NKH Funding Project Inc, and Brodyn’s Friends Foundations  are joining forces !! We have $7500.00 up for grabs. For every dollar donated between now and June 30th we are being matched dollar for dollar by Brodyn’s Friends Foundation. This money will be donated to The University of Notre Dame Gene Therapy budget. Help us reach this goal with your donation today!  Thank you!!

NKH, also known as Glycine Encephalopathy, is a rare, genetic, metabolic disease. There are currently only about 500 known cases worldwide.  Children with NKH are unable to breakdown the amino acid Glycine.  Toxic levels of glycine disrupt the normal function of the brain.   Symptoms include and are not limited to; seizures, lethargy, cognitive disabilities, feeding difficulties, low muscle tone, behavioral issues, gastrointestinal problems and early mortality.  

As of now, there is no cure.  There are medications that can improve outcomes, such as Sodium benzoate and Dextromethorphan.   It is a very complex disease, but our vision for a cure has never been more clear. To learn more please visit our menu for NKH Articles

Brodyn’s Friends is made up of a wonderful group of family and friends all lending support in various ways to our mission of finding a cure and better treatment options for NKH.  Our team members are a great group of volunteers giving of their time and resources to better the lives of children they don’t know!  We are eternally grateful! CLICK HERE TO BECOME PART OF OUR TEAM   

We are so grateful for each one of you and truly believe we can all help make a difference in the lives of the children affected with NKH.  Please join our mailing list so we can include you in all the success we share in finding a cure and better treatment options.   CLICK HERE TO BE ADDED TO OUR MAILING LIST.