About VENE
We exist because rare families deserve a soft place to land.
VENE — Voice, Empathy, Nurture, Empower — is a U.S. non-profit serving children with rare diseases and multiple disabilities, and the families who love them.
Our story
It began with our daughter.
The inspiration behind VENE comes from our daughter, who was born with multiple disabilities as a result of a rare genetic mutation. Her journey has shaped our lives in ways we could never have imagined and has given us firsthand experience with the challenges that families face when caring for a child with complex medical and developmental needs.
When our daughter was diagnosed, we entered a world that was unfamiliar and overwhelming. We had to learn about medical conditions, therapies, specialists, educational services, insurance processes, and support programs, often with little guidance on where to begin. We quickly realized that while there are many resources available, finding the right information at the right time can be incredibly difficult for families already dealing with emotional and physical exhaustion.
Throughout our journey, one thing became very clear: parents need more than medical care for their children. They need emotional support, practical guidance, trusted information, and a community of people who understand what they are experiencing. They need help navigating complex healthcare systems, understanding treatment options, accessing services, and finding hope during some of life's most difficult moments.
As we connected with other families, we discovered that many were facing the same struggles. Parents often felt isolated, overwhelmed, and unsure where to turn for reliable advice. Many spent countless hours researching therapies, searching for specialists, and trying to understand what resources were available to support their child and family.
VENE was created to help address those challenges.
Our goal is to support families raising children with rare diseases and multiple disabilities by providing guidance, emotional support, educational resources, and connections to communities that care. We want to help families navigate complex care journeys, learn about emerging treatment options, and access the information they need to make informed decisions for their children.
We also believe that hope is an essential part of every family's journey. Through faith-based encouragement, community support, and shared experiences, we aim to help families find strength and resilience even during the most challenging times. While every family's situation is unique, no family should feel alone.
Another important part of our mission is supporting caregivers. Parents and family members often dedicate themselves completely to the needs of their loved ones, frequently at the expense of their own well-being. We hope to build networks of support, including respite care resources and community partnerships, that give caregivers opportunities to rest, recharge, and continue providing the best possible care.
VENE was born from our family's experiences, the lessons we have learned, and the people who have helped us along the way. It exists because we understand how difficult this journey can be, and because we believe families deserve compassionate support, practical guidance, and reasons to remain hopeful about the future.
Our vision
Help families feel less alone.
Our vision is simple: to help families feel less alone, better informed, more supported, and empowered to advocate for their children. If we can make the path a little easier for even one family, then VENE will have fulfilled an important part of its purpose.
Why rare & multiple disabilities
Because this corner of care is too often unseen.
Roughly 7,000 rare diseases affect an estimated 25–30 million Americans — half of them children. Families of children with multiple disabilities often carry the heaviest, least-discussed load.
~50%
of rare diseases begin in childhood.
1 in 5
U.S. households includes a child or adult with a disability — and many feel unseen in healthcare settings.
7,000+
rare diseases — each one affecting real families searching for answers, support, and hope.
What we believe
Four small convictions that hold us up.
- No. 1
Rare is not invisible.
If 1 in 10 Americans lives with a rare disease, no one is truly rare. Together, we are millions. We exist to make sure no family has to whisper about their child in waiting rooms.
- No. 2
Care is more than a clinic.
It is the parking lot, the spreadsheet of bills, the way a doctor says a word, the meal that shows up, the friend who stays. Real care is the whole day.
- No. 3
Hope can be honest.
We are a faith-rooted community. We do not promise miracles. We promise presence, prayer, and the steady belief that your child is, and always will be, deeply loved.
- No. 4
Rest is sacred.
Caregivers cannot pour from empty. Respite is not a luxury — it is a right. We help families find trusted respite resources and community support.
Faith-rooted, never forced
We are a hope people, not a doctrine.
VENE is rooted in the conviction that every child is made in the image of God — and that families walking rare roads deserve a community that prays with them, not at them.
You do not have to share our faith to be held by us. Our doors are open to every family, every background, every belief. But for those who find strength in prayer, scripture, and a community of faith — that is here, too. Quietly, gently, and without pressure.
"Come to me, all you who are weary and heavy-laden, and I will give you rest."
Our team
People who have been in the room.
VENE is a small team of clinicians, chaplains, social workers, and parents. We are not perfect. We are present.
-
Dr. Imani Carter
Executive Director
Pediatrician. Mom to a son with a rare neurological condition.
-
Pastor Daniel Reyes
Faith & Hope Lead
Hospital chaplain. Believes in quiet prayers more than loud ones.
-
Maya Okafor, LCSW
Director of Family Support
Has led caregiver circles for over a decade.
-
Sasha Kim
Respite Network Coordinator
Helps families connect with trusted respite resources in their state.
Want to learn more about how we walk with families?
Read about the five ways we show up — or talk to someone today.