Drake Rayden Foundation

February 28th, Rare Disease Day is not just a date on the calendar for our family — it is our daily reality. A rare disease is defined as a condition that affects fewer than 200,000 people in the United States, but when you combine the thousands of rare diagnoses that exist, they impact over 300 million people worldwide.

Rare diseases are often genetic, frequently life-threatening, and chronically underfunded and under-researched. As a mom to two children with a rare disease, I live in the space between hope and heartbreak — fighting for treatments that don’t yet exist, for awareness that hasn’t yet reached enough people, and for a future that feels uncertain without intervention.

Our children have Nonketotic Hyperglycinemia (NKH), a devastating and ultra-rare metabolic disorder that affects the body’s ability to break down glycine. This toxic buildup attacks the brain, leading to severe developmental delays, seizures, low muscle tone, respiratory complications, and shortened life expectancy. Current treatments only manage symptoms — they do not stop the progression of the disease.

NKH steals milestones, independence, and in many cases, life itself. It is relentless. And because it is rare, families like ours often carry the weight of advancing research forward.

Right now, I am asking you to pray boldly for the gene therapy treatment we are fighting to bring to life — a therapy we are actively funding and pushing forward because our children’s futures depend on it.

We are not dreaming of something impossible; we are standing on the edge of something groundbreaking. But progress requires resources, urgency, and people willing to step in.

If you have ever wondered how you can make a difference, this is the moment — the labs have began making the vectors. The treatment is here...help us bring it home to Drake and Vivian.

Info Link: DrakeRaydenFoundation.com
PayPal Link: https://www.paypal.com/donate/?hosted_button_id=GT857Y2Y6WFB6
Venmo Link: https://venmo.com/u/DrakeRaydenFoundation

It is surreal to be here. Finally..a Scientific Press Release with our name..our drug being developed...our chance.

As a mother of two terminally ill children, dying with a rare disease...I remember reading these articles for years...praying, "Lord, if we could just get there...if we could just reach that level...we could make it...my babies would have a chance to live."

Hope for NKH is here, GLDC Gene Therapy is now. Years of blood, sweat, and tears...crying out in prayer..has all come to this time.

My children will have the first clinical trial that will bring generational change for so many others all because thousands have sacrificially given and helped us reach this milestone.

We are over halfway to our goal, $851,470.00 raised of the $1.6 Million needed in just 5 months. Trial is set for fall of this year. We are so close to the end.

YOU are the difference. Companies, researchers, donors that step towards the problem, not away from it....that is how you bring change!

Join us...Share this post, tag someone you want to read it, give now if you haven't, give again if you have. Pick up your rope and help us get to the finish line together.

To God be the Glory!

To learn more or to join our fight please visit DrakeRaydenFoundation.com or give directly here - https://www.paypal.com/donate/?hosted_button_id=GT857Y2Y6WFB6

Read the full article here:
https://www.prnewswire.com/news-releases/andelyn-biosciences-to-apply-the-aav-curator-platform-to-manufacture-clinical-grade-aav-for-drake-rayden-foundation-for-the-treatment-of-nonketotic-hyperglycinemia-302688707.html

More FDA document prep….hope is coming.

Join our fight to save Drake and Vivian- Learn more at DrakeRaydenFoundation.com