About ReNU2
Imagine your baby never meets their milestones. They never crawl. Never walk. Never begin to talk. Doctors run test after test, but no one can tell you why this is happening or what the future will hold. While other parents are watching their children make friends, play sports, and race through birthday parties, you are sitting in therapy rooms and doctors' offices, searching for answers and feeling completely alone. Then the seizures begin. Catastrophic seizures that last for hours. Ambulances. Helicopters. ICU admissions. Sitting beside your child, wondering if they will survive the night, or what abilities they may lose if they do. For years, thousands of families lived this reality with no explanation. Then, in April 2025, scientists made a breakthrough discovery: They revealed that a gene long dismissed as a nonfunctional "pseudogene" was, in fact, disease-causing, and linked it to what families now call ReNU2. Researchers estimate the recessive form alone affects approximately 1 in 40,000 children, more than 8,000 in the United States, and tens of thousands worldwide, making ReNU2 one of the most common recessive neurodevelopmental disorders ever uncovered. Yet most children remain undiagnosed because this discovery is so new that almost no doctors have ever heard of ReNU2. This is where the story changes. This is the beginning of an entirely new field of medicine. Right now, we are racing to find families, educate doctors, build patient registries, understand how the disorder progresses, and lay the groundwork for treatments. But because ReNU2 was only just discovered, almost all of that infrastructure still needs to be built from scratch. Every donation helps build this field. Every share helps another family find answers. You are not late to this. You are here at the beginning, at the moment when everything can still change.
About This Campaign
$10,000 will not cure ReNU2. But it can change what happens next. Right now, children around the world are living with ReNU2 while their families search for answers. Most doctors have never heard of this disorder. Most genetic tests do not even look for it. Today, the only reliable way to diagnose ReNU2 is through Whole Genome Sequencing — an advanced test most families never receive. That means countless children are still being missed, misdiagnosed, or left completely undiagnosed. And while they wait, the clock does not stop. For children with ReNU2, every seizure carries the risk of catastrophic brain injury. Skills that took years to build — walking, talking, eating independently — can be stripped away in a single episode and may never return. A child who was once singing and dancing can be silenced. And for some children, a single seizure is fatal. The sooner we move, the more children we can help.
What This Campaign Funds
-Finding and connecting ReNU2 families worldwide
-Educating doctors about how to recognize and diagnose ReNU2
-Advocacy to get ReNU2 added to more genetic testing panels
-Translating educational materials so language and geography are not barriers for families
-Connecting families to active research studies
-Building the first global registry database for ReNU2
Why This Matters
Every rare disease treatment starts the same way: Families are found, data is gathered, researchers organize, and treatments become possible. That process is just beginning for ReNU2. The families we find today become the subjects of research studies tomorrow. The data we gather now is what attracts researchers, funding, biotech companies, and eventually clinical trials. Every donation helps move this field forward. Every share increases the chance that another child will finally get diagnosed. This is the beginning. And what happens at the beginning changes everything.