Programs and Services

Programs:

Love Never Sinks • Lesch-Nyhan

Love Never Sinks is a nonprofit dedicated to helping families affected by Lesch-Nyhan disease.

We understand the challenges that come with this rare condition—and we’re here to make sure no family ever feels alone on the journey.

Our mission is to bring families together, share knowledge, and provide hope. We connect parents and caregivers to resources, medical experts, and one another, helping families find strength, understanding, and support. We also work closely with researchers and doctors to move science forward and build a brighter future for everyone living with Lesch-Nyhan.

Every donation helps us continue this important work—whether it’s sending care packages, supporting family connections, or advancing research that gives hope for tomorrow. Together, we can make a difference and remind every family that love never sinks.

Programs and Services

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Supporting Community

Programs and Services

Stay Connected

Community and Support

Learn More

  • Past Presentations: Access recordings of previous educational presentations and webinars on various topics related to Lesch-Nyhan syndrome.

  • Resources Explore a collection of valuable resources, including links to scientific papers, informative videos on Lesch Nyhan, printable guides, connections to global support groups, and financial assistance options.

  • Studies and Research Stay informed about the latest studies and research projects Love Never Sinks has supported. Here, we share updates on ongoing and completed research, breakthroughs, and collaborations aimed at advancing understanding and treatment options for our community.

Need Help?

  • Application for Assistance: Apply to Love Never Sinks for financial aid, medical equipment, or other resources to support your family's needs.

  • Mission Impact: Help us learn more about the impact of our programs on individuals and families affected by Lesch-Nyhan syndrome.

Support Your Community & Love Never Sinks

  • Donation Page: Make a generous contribution to support our mission and programs.

  • Volunteer: Lend your time and heart to support families, connect the community, and make a difference with Love Never Sinks

  • Share your Story Share your family’s journey with Lesch-Nyhan disease and help others feel less alone. Love Never Sinks invites parents and caregivers to contribute their stories of strength, hope, and connection.

  • Media Release: Fill out our media release to share your story with the community.

  • Ideas for Future Presentations: Submit your ideas for future educational presentations and webinars.

  • Fundraise: Organize a fundraising event or campaign to help raise awareness and funds.

Events

Merch

  • Show Your Support with Love Never Sinks Merchandise! Get your very own Love Never Sinks t-shirt or sweatshirt! Wearing our merch is a great way to spread awareness and show solidarity with families affected by Lesch Nyhan. Plus, all proceeds go directly to supporting our mission. Visit our website to shop now and make a difference today!


Check out the 2025 Million Dollar Bike Ride

Click here for more details!

Four women on bicycles crossing the finish line at the Million Dollar Bike Ride event, wearing pink tutus and helmets, cheering and smiling, with a large colorful banner overhead and spectators on the side.
A woman and a young boy living with Lesch-Nyhan enjoying an outdoor hike on a wooden bridge surrounded by lush green trees.

Love Never Sinks is a nonprofit organization dedicated to supporting families affected by Lesch-Nyhan disease. We bring together families, researchers, and medical professionals to build understanding, share resources, and advance research toward better treatments and quality of life.

Our mission is to create a connected, informed, and empowered community. We do this by helping families navigate the challenges of Lesch-Nyhan through education, emotional support, and practical resources—while also fostering collaboration in scientific research.

Through programs that focus on family support, awareness, and research readiness, Love Never Sinks works to ensure no family faces this rare disease alone and that every effort moves us closer to meaningful progress for the Lesch-Nyhan community.

About us

Frequently Asked Questions

  • 1. Community Connection & Emotional Support

    Supportive community programs to help families feel connected and less isolated:

    • Stay Connected: Quarterly newsletters with updates, resources, and news. Love Never Sinks

    • Birthday Club: Personalized birthday cards sent to community members. Love Never Sinks

    • Stories from the Heart: Family stories that offer encouragement and shared experience. Love Never Sinks

    • Bereavement Memorials: Honors and remembrance for loved ones who have passed. Love Never Sinks

    • Holiday Gift Exchange: Annual Christmas gift exchange to foster connection and joy. Love Never Sinks

    • WhatsApp Updates & Community Hubs: Real-time updates and support group channels. Love Never Sinks

    2. Information, Education & Resources

    Educational tools and guidance to help families navigate LND:

    • Past Presentations & Webinars: Access to recordings and expert talks related to Lesch-Nyhan. Love Never Sinks

    • Resource Collections: Links to scientific papers, videos, guides, and other informational tools. Love Never Sinks

    • Printable Guides and Info Packets: Materials for understanding the disease and explaining it to others. Love Never Sinks

    • QR Code Business Cards: To help explain LND quickly to caregivers or professionals. Love Never Sinks

    3. Practical & Financial Support

    Help to reduce burdens on families:

    • Application for Assistance: Families can apply for financial aid, medical equipment, or other needed supports. Love Never Sinks

    • Direct Support Efforts: Funding and connections to help obtain resources that improve quality of life. Love Never Sinks

    4. Research Advocacy & Collaboration

    Love Never Sinks promotes research and helps families stay involved:

    • Research Updates: Information on studies and scientific efforts supported by the organization. Love Never Sinks

    • Partnerships with Researchers and Clinicians: They connect families with experts to improve understanding and care. Love Never Sinks+1

    • Fundraising for Research Grants: Supporting and funding research projects aimed at meaningful treatments. Love Never Sinks

    5. Awareness & Advocacy

    • Public Awareness Initiatives: Participating in events (like bike rides) and advocacy to raise awareness and funding. Love Never Sinks

    • Stories, Blogs, and Outreach: Sharing real-life perspectives to educate others and reduce isolation. Love Never Sinks

Connect with us

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LNS@LoveNeverSinks.Org
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