news and information

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Happy 2025!

As we end our year and we jump into 2025, I want to thank every one of you for your constant love and support.  We had another amazing year to benefit our children.  This year we have continued to strengthen our partnership with The NKH Crusaders Organization collaborating on multiple projects including fundraising, advocacy and caregiver support.   In April we attended their 10th Annual NKH Crusaders International Conference and Benefit Dinner in Boston.  We were treated to another first class event and I was proud to speak at the Benefit Dinner and present a touching tribute video to their Executive Director, Kristin Archibald, honoring her decade of service.  Later in the year, we collaborated on an application to the Chan Zuckerberg Rare As One Grant and in October of this year NKH Crusaders was awarded a 5-year grant that will allow us to build a sustainable rare disease network!  These funds cannot be used for research so in year one, it will be utilized to increase the NKH Crusaders capacity, including hiring staff.  I am thrilled to announce that I have been offered and have accepted the position of Director of Operations!  Brodyn‘s Friend’s Foundation will remain strong and intact and this change will simply propel our mission, stronger and faster.  In this role I am excited to take on more advocacy and caregiver support initiatives.  This includes helping to create and moderate “Rare Connections“ a caregiver support group providing a safe and supportive space for caregivers of individuals with any rare disease, launching in January 2025.  To enroll use this link. https://www.nkhcrusaders.com/support-group

On the advocacy front , you will remember in December 2023 we addressed the FDA for the first time.  The approved summary can be found here - FDA SUMMARY

This past December 2024, I was invited back to address them for a second time for an FDA CBER Patient Listening Meeting titled: Patient and Care Partner Perspectives on Early Enrollment into Gene Therapy Clinical Trials for Rare Diseases. That link and video can be found on Brodyn’s Friends facebook page.  

We also a hit new combined fundraising goal with our partners including The NKH Crusaders, Nora Jane Foundation, The Lucas John Foundation, The John Thomas Foundation and several individual families.  This success was possible due to a generous family that offered a matching gift campaign of 150,000! The “Colorado Blitz” that so many of you participated in was a huge part of this. I want to thank all of you again for that wonderful month of giving in May that yielded over $100,000 in contributions to the research specifically being done in Colorado and with the match well over $300k for all NKH research projects.  

None of this would be possible without you! Alone we are Rare and Together we are Strong!  We are so blessed to have your love and support!  From all of us at the Brodyn’s Friend’s Foundation and the NKH Crusaders we wish you a happy, healthy, and blessed 2025!  

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 17th Birthday 

TBD -  NKH Crusaders Annual Conference and Benefit Dinner, Boston, Mass

May 2, NKH Awareness Day

June 6, John Thomas NKH 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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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.