Happy 2024!
2023 was an incredible year. We were able to accomplish so much thanks to the support of so many of you. Early in the year, we partnered with The NKH Crusaders and completed and implemented the first professional International NKH Patient Registry.
In October, Notre Dame filed a Provisional Patent for GLDC Gene Replacement Therapy. This is only the first step of many! There is still much to be done but this is fantastic progress.
On December 15, 2023 we addressed the FDA with other outstanding organizations including NKH Crusaders, The Nora Jane Foundation, The Lucas John Foundation, Joseph’s Goal based in the United Kingdom, and The Jack Richard Urban Foundation, all advocating for NKH. This Patient Led Listening Session highlighted our children’s most burdensome symptoms,current symptom management, and our thoughts on clinical trials and the possible risks associated.
2024 is going to be a huge year. We are all working hard to achieve our mission of a cure and we have a great year planned ahead with some surprises as well! Here are some dates to keep in mind to help us celebrate our children, and to help us raise awareness and the needed research funds:
February All Month, Rare Disease Month
April 2, Brodyn’s Sweet 16th Birthday
April 10-12th NKH Crusaders Annual Conference and Benefit Dinner, Boston, Mass
May 2, NKH Awareness Day
June 7, John Thomas Foundation Golf Classic, St. Louis, MO
November 2, NKH Remembrance Day
The 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
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