We have a wonderful year a head of us, full of Hope for all of our children with NKH. The research happening at Notre Dame regarding Gene therapy is in full swing for both GLDC and the AMT gene mutations. Dr. Vanhove and the University of Colorado are also making incredible progress including working with our children clinically, which is amazing. All of this progress is only possible because of each of you! We are so incredibly thankful for all of Brodyn’s Friends! For your Love, Time, Prayers, and Donations.
Some dates to keep in mind this year to help celebrate our children and to help us raise awareness and the needed research funds are as follows:
April 2, Brodyn’s 15th Birthday
May 2, NKH Awareness Day
June 9, John Thomas Foundation Golf Classic, St Louis MO
October TBD NKH Crusaders Annual Benefit Dinner, Boston Mass
November 2, NKH Remembrance Day
Details surrounding these days and others will be communicated through our Brodyn’s Friends Facebook page so be sure to check that often. Thank you for your Continued support!
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.
Brodyn’s Friends has partnered with other fantastic NKH Family Foundations around the country. Together and with your help, we are raising the finances needed to find better treatment options and an eventual cure for NKH. Our Leadership committee is currently funding two incredible institutions and doctors.