Community Hub
Welcome to the Love Never Sinks Community Hub — a place to stay informed, inspired, and connected. Here you’ll find our latest newsletters, event updates, and annual reports, along with links to research highlights and family stories from around the world. Together, we’re building a supportive network that shares knowledge, celebrates progress, and strengthens the Lesch-Nyhan community through connection and collaboration.
To help spread awareness and show your support, we’re offering a free Love Never Sinks Lesch-Nyhan sticker—perfect for water bottles, wheelchairs, laptops, or to share with friends and family.
Please fill out this form to receive yours and stay connected.
On-line Events
Join us February 28, 2026 at 4pm CT. This year, we are honored to welcome Dr. Oleg, who will share updates on his work at the NIH and his ongoing collaboration with the Lesch-Nyhan community. Dr. Oleg will provide an update on the current NIH study—11 individuals are enrolled, with a goal of 30—and discuss what researchers are learning so far and why community participation matters.
We’ll also share updates on what Love Never Sinks has been busy with, including new collaborations, research readiness efforts, community support initiatives, and what’s ahead in 2026.
Join us for this important conversation to learn, ask questions, support one another, and help shape the future for those living with Lesch-Nyhan disease.
As we prepare for Rare Disease Day, we invite you to celebrate with us!
Sticker Giveaway
To help spread awareness and show your support, we’re offering a free Love Never Sinks Lesch-Nyhan sticker—perfect for water bottles, wheelchairs, laptops, or to share with friends and family.
Please fill out this form to receive yours and stay connected.
Color With Us!
We also have Rare Disease Day coloring pages available (link in the comments).
Color during the meeting, with your family, or on your own—and then SHARE YOUR FINISHED ARTWORK WITH US! We can’t wait to see your creativity and LN spirit.
Take a photo with your sticker
Share your finished coloring page
Post and tag us
Use these hashtags to help us amplify awareness:
#RareDiseaseDay #LeschNyhan #EveryZebraHasAStory #SeeTheRare #ShareTheData #ChangeTheFuture #RareButStrong #LoveNeverSinks
“Every zebra has a story. This is ours. ”
SEE THE RARE.
SHARE THE DATA.
CHANGE THE FUTURE.
In Person Events
Registration for Rare Disease Day, 2026 is open! Visit us at our Exhibit Table! The University of Minnesota’s Center for Orphan Drugs (CODR) hosts this annual event to bring together patients, researchers, organizations, students, and policy-makers, and more in raising awareness for rare disease issues. The event is free and open to all on Thursday, March 5, from 9:30-2:15 with options to attend virtually or in-person at the McNamara Alumni Center. This year’s theme is “Therapies for Few, Impact for Many: Rethinking How We Develop Rare Disease Treatments.”
2024-2025 Annual Report
Updates
Each story shared here comes straight from the heart — moments of struggle, strength, and hope from families touched by Lesch-Nyhan. Their voices remind us that love never sinks, even in the hardest times. We invite you to read, feel, and be inspired by their journeys — and to share your own story so together we can one day create a book that celebrates the courage and love within our community.
