Love Never Sinks -Lesch Nyhan

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Love Never Sinks -Lesch Nyhan

Extending a helping hand to LN friends & families. ❤️ Text LNS to 53-555 to donate.

05/12/2026

This was a great Summit ! Thank you all for putting it on.

05/11/2026

Open Letter to Dr Nyhan

Dear Dr. Nyhan,

Thank you for the life you dedicated to children and families affected by Lesch-Nyhan Syndrome.

For decades, you gave this community your time, your knowledge, your compassion, and your heart. You helped families find answers in moments filled with uncertainty and helped create understanding for a disease many in the world had never heard of.

But beyond your research and accomplishments, families remember your kindness. They remember feeling heard, supported, and cared for.

Because of you, families felt less alone.

Your work shaped the future of Lesch-Nyhan Syndrome research and care, but your legacy reaches even further — into the lives of every family you encouraged, every child you fought for, and every person you inspired to continue learning and advocating.

At Love Never Sinks, we are committed to carrying your legacy forward through education, community, advocacy, and hope.

Thank you for believing our children mattered.

You will always hold a special place in the hearts of the Lesch-Nyhan community.

With gratitude and love,
Love Never Sinks 💙

🔗 Link to more information and The Dr. William L. Nyhan Memorial Education Fund in the comments. 🕊️ https://www.loveneversinks.org/the-dr-william-nyhan-memorial-education-fund-lns -nyhan-open-letter

05/08/2026

Watching a parent turn love into action is something truly special. 💙

Jordan is taking on a race to raise funds in support of his son Luca and to help move forward awareness, support, and advances for families affected by Lesch-Nyhan Syndrome. Every mile he runs represents hope, determination, and the strength of families who face this rare disease every single day.

Lesch-Nyhan may be rare, but the love, courage, and community behind these children is powerful. By supporting Jordan’s fundraiser, you are helping bring visibility to a condition many people have never heard of while also supporting efforts that can improve the future for individuals and families living with Lesch-Nyhan Syndrome.

Please consider donating, sharing, and cheering Jordan on as he races for something much bigger than the finish line. 🏃‍♂️💙

Together, we can help families feel less alone and continue pushing for progress, understanding, and hope.

🔗 Support Jordan here link in the comments to Jordan’s JustGiving Fundraiser

05/01/2026

Love Never Sinks is committed to continuing meaningful engagement with research professionals to help move the needle forward for individuals and families impacted by Lesch-Nyhan Disease/Syndrome.

One of the ways we’re doing this is by working alongside CombinedBrain—a collaborative organization that brings together patient advocacy groups, researchers, clinicians, and industry partners. Their mission is to accelerate research and treatment development for rare neurological conditions by breaking down silos and fostering shared knowledge across communities.

Partnerships like this matter. They ensure that the voices and real-life experiences of our families help shape the direction of research—not just in the future, but right now.

We also want to encourage our community to stay connected and informed. Please take a moment to check out CombinedBrain’s new website to learn more about their work and the growing network supporting rare disease research.
🔗Link in the comments

And don’t forget to follow along at loveneversinks.org for updates on upcoming research and study participation opportunities.

Participation in research is one of the most powerful ways we can create change. Whether it’s contributing to a registry, participating in a study, or sharing lived experiences, every step helps researchers better understand Lesch-Nyhan and move closer to meaningful treatments and improved care.

Together, we are building a stronger future for our families 💙

04/29/2026

💙 We’re excited to share an opportunity to connect, learn, and be part of the rare disease community!

Love Never Sinks will be attending the Great Plains Rare Disease Summit in Souix Falls, SD. There will be a Summit Watch Party hosted by the Minnesota Rare Disease Advisory Council on May 7–8—and we’d love for you to join us in person in Sioux Falls or Virtual!

This annual summit, hosted by Sanford CoRDS , brings together doctors, researchers, advocates, and families to share the latest in rare disease research, care, and support. It’s a meaningful way to stay informed and feel connected to a community that truly understands.

We’re especially proud to work alongside Erica Barns through the Minnesota Rare Disease Advisory Council , and excited that she will be speaking at this year’s summit!

📅 Thursday, May 7 | 3:00–5:30 PM
📅 Friday, May 8 | 8:30 AM–5:00 PM
📍 Sanford Sioux Falls, SD

Whether you can stop by for a session or attend the full event, we hope to see you there 💙

🔗 link to event in the comments

03/31/2026

With Sanford CoRDS – I just got recognized as one of their top fans! 🎉

03/30/2026

The National Institutes of Health (NIH) is still actively looking for participants for an important natural history study focused on disorders like Lesch-Nyhan—and your family’s experience truly matters.

This study is helping researchers better understand how the condition changes over time and brings us closer to improved care and future treatments.

💡 Participation starts with simple telehealth visits and may include one in-person visit per year at the NIH in Bethesda, MD.

👨‍👩‍👦 Who can participate?
• Individuals with Lesch-Nyhan
• Carriers

💬 Have questions or just curious if it’s a fit? You can reach out directly and learn more—no commitment required.

📧 Shannon Haines, CGC
[email protected]

Every family who participates helps build knowledge, strengthen research, and create hope for what’s ahead. 💙

👉 Learn more / sign up: see link in the comments

03/20/2026

Many airports will soon be required to provide changing tables for adults with disabilities. Now federal officials are looking for input on how to go about implementing the new mandate.

03/15/2026

We’re excited to share a research update from Dr. Giulia Bernardini and Sundas Javad about their work to better understand Lesch-Nyhan Disease (also known as Lesch-Nyhan Syndrome).

Their research looks at tiny particles in the body called extracellular vesicles — small “messengers” released by cells that carry important information. By studying these messengers in the blood of people with LND, researchers hope to learn more about how the disease affects the brain and body.

This work could help identify new markers of the disease and may one day lead to new treatment approaches.

Research like this helps move our community forward and brings us closer to better understanding Lesch-Nyhan Syndrome.

📄 Read the paper: 🔗link in the comments

Thank you to the researchers and families helping advance LNS research. 💙

03/04/2026

We are honored to have you join us in person or virtuality for the University of Minnesota’s Rare Disease Day on Thursday, March 5, 2026.

Please use this Zoom link to join us virtually during the formal program.

Join Virtually! Link in the comments!

9:00 am - 10:30 am | Patient Advocacy Town Hall Breakfast | Moderated by Erica Barnes | Ski-U-Mah Room
9:30 am - 2:15 pm | Exhibitors | Johnson Great Room & Heritage Gallery
10:00 am - 11: 45 am | Poster Session | Johnson Great Room & Memorial Hall | Posters will remain up until 2:15
11:45 am - 2:15 pm | Formal Program and Lunch | Memorial Hall

Address

1911 West Wilson Street # 406
Batavia, IL
60210

Telephone

+16125165721

Website

http://loveneversinks.org/

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