Fighting for a future without DNM1 seizures.
Rare Dynamos unites families, researchers, and clinicians worldwide to accelerate therapies, fund breakthrough science, and build a global community for those living with DNM1 epilepsy.
"Therapies · Research · Global Community"
— the three pillars of Rare Dynamos
Research for the questions that still remain.
DNM1 epilepsy is an ultra-rare, severe neurological disorder caused by mutations in the Dynamin-1 gene. Most children affected experience seizures that are difficult to control, significant developmental delays, and a quality of life that demands urgent medical attention.
Rare Dynamos was founded by families who refused to wait. We bring together the brightest minds in rare disease research, connect families across the globe, and drive the development of targeted therapies — because our children cannot afford to be forgotten.
Every dollar raised, every family connected, and every research paper funded brings us one step closer to a world where DNM1 epilepsy is treatable.
Three pillars. One mission.
Therapies
We fund and advocate for the development of targeted gene therapies, small molecule treatments, and precision medicine approaches specifically designed for DNM1 epilepsy.
Research
We collaborate with leading neurologists, geneticists, and research institutions worldwide to deepen scientific understanding of the DNM1 gene and its role in epilepsy.
Global Community
No family should face this diagnosis alone. We connect patients and caregivers across borders, share resources, and amplify the patient voice in medical and policy conversations.
Ultra-rare condition — fewer than 200 known patients identified worldwide.
Early onset — seizures typically begin in infancy and are often severe and drug-resistant.
De novo mutations — most cases arise from a new mutation, not inherited from parents.
No approved therapies — there are currently no DNM1-specific treatments.
Hope on the horizon — gene therapy and precision medicine are opening new doors.
What is DNM1 Epilepsy?
Dynamin-1 (DNM1) is a protein essential for proper nerve cell communication in the brain. Mutations in the DNM1 gene disrupt this process, leading to a severe epilepsy syndrome characterized by frequent seizures, intellectual disability, and developmental regression.
Learn More & Connect →There are many ways to make a difference.
🔬 Fund Research
Your donation directly supports scientific research into DNM1 epilepsy, funding lab studies, collaborative projects, and clinical data collection.
Donate Now →🌐 Join the Registry
Families affected by DNM1 epilepsy can join our patient registry — your data helps researchers understand the condition and develop better treatments.
Register Your Family →📢 Spread Awareness
Share our mission, follow us on social media, and help us reach more families who may be living with an undiagnosed DNM1 mutation.
Get Involved →Ready to join the Rare Dynamos community?
Together, we are stronger. Together, we will find answers for DNM1 epilepsy.