You Are
Not Alone.
The Luminary Foundation connects, supports, and advocates for every family living with Fenwick Syndrome. From diagnosis to adulthood — we're with you every step.
Start here — a guide made for this exact moment.
Find families who understand your journey.
Advance the research that changes futures.
Where Do You Need Help?
We Built This For You
Newly Diagnosed
If you've just received a Fenwick Syndrome diagnosis, we know this moment is overwhelming. You may be feeling fear, grief, confusion — all of it is completely understandable. Start here. We've created a step-by-step guide specifically for families in your exact position, made by parents who've been where you are.
Start HereFamily Community
Connect with thousands of families who understand exactly what you're going through. Our community includes parents of newly diagnosed children, adult patients, siblings, and grandparents — every kind of Fenwick family. Find support groups, share stories, and never face this alone.
Meet Our CommunityResearch & Advocacy
Stay current on the latest Fenwick Syndrome research, clinical trials, and how to advocate for better care and funding. We translate complex medical science into clear language so every family — not just those with medical backgrounds — can understand what's happening and what it means.
See Our ResearchFifteen Years of Impact
Our Impact Since 2009
Real Families, Real Journeys
Families Like Yours
Every family in our community has walked this road. Their stories remind us: hope is possible, and you are not alone.
“When our son Eli was diagnosed at 8 months, we felt completely lost. Finding the Luminary Foundation changed everything.”
Jennifer M.
Parent · Illinois
“The research grants this foundation funds gave us real hope. Our daughter is in a clinical trial right now.”
Marcus & Diane T.
Parents · Texas
“I've been a Fenwick patient for 23 years. The Luminary community is my family.”
Priya K.
Adult patient · California
Science We Fund
Advancing the Science
Every dollar donated to research goes directly to Fenwick Syndrome science. Here's what your support is making possible right now.
Dr. Sarah Okafor, PhD
Northwestern University Feinberg School of Medicine
This study investigates how a specific protein (FENS-1) in kidney cells behaves differently in children with Fenwick Syndrome. The goal is to find a drug target that could slow kidney disease progression without harming liver function — potentially reducing how often children need monitoring procedures.
Dr. James Whitfield, MD, PhD
Children's Hospital of Philadelphia
Right now, Fenwick Syndrome is confirmed through genetic testing after symptoms appear. This project is developing a simple blood test that could detect the condition in newborns within 48 hours of birth — potentially before symptoms develop, giving families more time and more options.
Dr. Meera Krishnaswamy, PhD
Stanford University School of Medicine
This is early-stage but groundbreaking research — exploring whether gene therapy could correct the underlying FENS gene mutation responsible for Fenwick Syndrome. This work is in animal models today, but represents the first serious attempt at addressing the root cause rather than just managing symptoms.
2 Active Clinical Trials Currently Enrolling
Fenwick Syndrome patients may be eligible for Phase 2 and observational trials at leading research centers. Enrollment criteria, locations, and how to apply are explained in plain language.
Technology in Service of Families
How Technology Serves Our Families
We use AI carefully — to make it easier for families to find what they need, understand what they're facing, and feel less alone.
AI Resource Matcher
Overwhelmed by information? Tell us where you are in your journey — diagnosis stage, child's age, what you need most. Our AI finds the exact resources for your situation in seconds, written with the warmth of a family who's been there.
Find My ResourcesAI Research Translator
Medical research papers are hard to read. Paste any Fenwick Syndrome research abstract and our AI explains it in plain language — what was studied, what they found, and what it might mean for your family.
Translate a PaperAutomated Family Connect
New families are matched with experienced families at similar stages automatically. No waiting, no forms — just connection when you need it most. Our matching considers diagnosis age, location, and what kind of support you're looking for.
Get MatchedSmart Donation Impact
See exactly where every dollar goes — in real time. Our AI generates personalized impact reports for every donor, showing specifically how your gift contributed to Fenwick Syndrome research and family support.
See Your ImpactMeet Us In Person
Connect In Person
Some things can only happen face-to-face. Our events are where families become community.
August 14–16
2026 Annual Luminary Conference
Flagship EventOur flagship annual event brings together Fenwick families, researchers, and clinicians from across the country. Three days of sessions, connection, and community. Scholarship funding available for families who need it.
June 7
Midwest Family Support Day
A one-day gathering for Fenwick families in the Midwest — casual, warm, and focused on connection. Kids are welcome. Childcare provided. No agenda, just community.
May 2
Research Symposium Webinar
Dr. Sarah Okafor and Dr. James Whitfield present the latest findings from their Luminary-funded research, with a Q&A open to all families. Closed captions and recording available.
Fund the Future
Fund the Research That Changes Everything
100% of research donations fund Fenwick Syndrome science directly. No overhead on research gifts. Every dollar you give goes to the labs, the researchers, and the families who need results.
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Tax Status
501(c)(3)
Remembering Our Angels
We hold space for every child and family we've lost. Our In Memoriam page honors their lives and the legacy they leave in our community. Their names remind us why this work matters.
Visit In MemoriamStay Connected
Join 8,000+ families receiving our monthly newsletter — research updates, family stories, event announcements, and resources tailored to where you are in your journey.