Rish Gene DNA helix woven into a dynamin-inspired collar around a vesicle
A family’s mission to change the future of DNM1.

His future
deserves a
breakthrough.

Our son Rishan was diagnosed with DNM1 at just nine months. We’re working to advance genetic treatments—for him, and for other children whose families are holding on to the same hope.

Help fund a breakthroughMeet Rishan

Supporting DNM1 research and the development of potential treatments.

Rishan held close in his mother’s arms during a hospital stay
For RishanFor children with DNM1For a future with more possibilities
Rishan in a red outfit and blue glasses, resting on a white recliner
Rishan Our little boy. Our biggest reason.
Rishan enjoying time outdoors on a picnic blanket
The boy behind the mission

Our little boy.
Our whole world.

At just nine months old, Rishan was diagnosed with DNM1, a rare genetic disorder that affects brain development. In one conversation, the future we had imagined for our little boy became heartbreakingly uncertain.

We watch him work so hard to do what comes naturally to so many babies—even holding his head up. We have faced the fear of seizures and the ache of milestones that remain out of reach. Alongside the everyday work of caring for him, we carry questions we cannot answer.

Will he sit? Will he walk? Will we ever hear him say “Mama”?

Then Rishan giggles, and for a moment, the worry gives way to joy. His smile fills our world. We want you to know this little boy: deeply loved, full of warmth, and bringing happiness to the people around him.

We cannot know what his future will hold. But we want to give him every chance to grow, to connect, and to tell us what he needs. That love is why we are taking action—and why your care for Rishan means so much to our family.

Explore the missionDonate

What DNM1 takes away

DNM1 can affect the foundations of a child’s life: the ability to move, communicate, eat, and see the world around them. Seizures can begin in infancy and be difficult to control. For families like ours, these are not just symptoms on a page—they shape every day, every milestone, and every hope for the future.

Global developmental delays

Profound developmental delays turn holding the head up, sitting, walking, and learning into daily struggles—milestones families long to see their children reach.

Early-onset epilepsy

Severe seizures typically begin in infancy and are often drug-resistant.

Low muscle tone & movement difficulties

Low muscle tone can make posture and movement difficult. Some children also develop stiffness or involuntary movements.

Speech & communication difficulties

Speech may be very limited or absent. Children may need support and alternative ways to communicate.

Feeding difficulties

Feeding and swallowing can be major daily hurdles. Some children need a gastrostomy tube (G-tube) to receive the nutrition they need.

Vision impairments

Poor visual tracking, eye alignment problems, or difficulty processing visual information can affect how children see and interact.

Read about DNM1 clinical features

Why we are taking action

We are bringing parents, scientists, clinicians, and supporters together to explore treatments for his DNM1 R237W mutation. Our goal is to help build the evidence and research tools needed to move potential therapies towards clinical studies.

This work begins with our son, but our hope reaches other children and families living with DNM1. Research takes careful testing, collaboration, and resources. We are committed to helping move it forward.

Explore our research roadmap →
Our mission

Turn possibility into progress.

We are bringing parents, scientists, clinicians, and supporters together to help develop treatments for Rishan’s condition. Our mission starts with him, but reaches every child who could benefit from progress in DNM1 research.

Our goal is to develop a therapy for Rishan’s DNM1 R237W mutation and help build a path for other children.

Our proposed research roadmap. Progress depends on the evidence at each stage and regulatory review; this is not an available treatment or a promise of benefit.

Rishan wearing blue glasses and brown overalls
The reason behind every step.
01In development
Build the foundation

Support disease models and patient-derived cells to help researchers understand DNM1 and evaluate potential therapies.

02Up next
Design the therapy

Design a potential therapy tailored to Rishan’s DNM1 mutation, R237W.

03Up next
Test in human cells

Test the approach in patient-derived human cells to assess its effects and look for signs of benefit.

04Up next
Test in mice

Study the therapy in relevant mouse models to assess its effects, delivery, and potential risks.

05Up next
Manufacture & test safety

Manufacture the investigational therapy and complete the quality and safety testing needed to seek FDA clearance.

06Up next
Treat

Once the FDA clears the investigational treatment to proceed, work with the clinical team to administer it and carefully monitor safety and response.

There is more than one way to help

Help beyond a donation.

Share his story.

Share this mission with a friend, your community, or someone who can help. One introduction can open a new door.

Connect us with a researcher.

Know a researcher or clinician working on rare neurological disorders, gene editing, or antisense therapies? Introduce them to Rishan’s mission.

Before you give

What would my donation support?

Our research priorities include disease models, patient-derived cells, and testing potential therapies. The roadmap describes the work we aim to support.

Is a treatment available today?

No. This is a research effort. Any investigational treatment would require supporting evidence, safety testing, and regulatory clearance.

Where are donations handled?

Donations are handled through the linked GoFundMe page for Hope for Rishan, rather than collected on this website.