Love Never Sinks -Lesch Nyhan

10/17/2026

🎅✨ It’s the most wonderful time of the year — the Love Never Sinks Christmas Gift Exchange is back! 🎄💕

Let’s spread holiday cheer and make the season extra special for our Lesch-Nyhan Disease families!

🎁 Register by Sunday, November 8, 2026. Complete this form to sign up your child for the exchange.

🎀 Get Matched: Matches will be shared by Friday, November 13, giving families time to shop and prepare their gifts.

💝 Suggested gift amount: Around $30.

📦 Mail your gift by Monday, November 30, to allow plenty of time for holiday delivery. We recommend using a shipping service with tracking.

🌎 Thoughtful Matches: Families will be matched based on their child’s age, interests, and location whenever possible, helping keep shipping costs down.

💙 Need a little help? If you’d love to participate but need assistance, please let us know. We want every child to have the opportunity to be part of the fun!

Let’s make memories, share smiles, and remind our families that they’re part of a caring community. Every gift brings a little extra joy! 🎁❤️

https://www.loveneversinks.org/christmas/gift

10/02/2026

Looking Ahead 💕

As we close this year’s report, we are grateful for the progress made and hopeful for what lies ahead. During 2025–2026, we strengthened connections between families and researchers, moved closer to launching our community registry, supported families through difficult moments, and continued building Research Readiness within the Lesch-Nyhan community.

🚀 As we look toward 2026–2027, we will continue to support families, grow awareness of Lesch-Nyhan Disease, strengthen research connections, and create opportunities for our community to share their experiences and contribute to research. There is still much to learn, but together we are building a stronger foundation for the future.

Thank you for being part of Love Never Sinks. Your support, stories, time, and belief in this community help make this work possible.

Hope starts here — with all of us. ❤️

Check out the report here- https://www.loveneversinks.org/community-hub -report

09/26/2026

Help Support Jordan Ignatius ❤️

https://www.justgiving.com/crowdfunding/jordan-ignatius?utm_source=IG&utm_campaign=22&utm_content=post

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

09/26/2026

💙 Help Us Tell the Love Never Sinks Story! 🦓

As we prepare our annual report, we’d love to include photos that capture the heart of our Love Never Sinks community!

Whether it’s a family moment, a special memory, an LNS care package, an awareness event, your favorite zebra stickers out in the world, or a moment that represents hope and connection, we’d love to see it! 💙

📸 Have a photo to share? Drop it in the comments or send it to us via the website. Your photo may help us show the impact of our community and the connections we continue to build together.

Every photo tells a story. Every family matters. Together, we’re building a community where no one has to face Lesch-Nyhan Disease alone.

Thank you for being part of our story! 💙

Please let us know if you’re comfortable with your photo being included in our annual report.

🦓💙

https://forms.monday.com/forms/bfaf0ed9ab6f6ae99aeb9c953955042e?r=use1&story=

09/09/2026

Join DEEP and Rare Birds Foundation for Listening Out Loud: Communicating with Joy, a free webinar about how we can recognize, respond to, and celebrate the many ways children with complex communication needs express themselves.

09/05/2026

💙 New Resource Partnership: Love Never Sinks + Courageous Parents Network

We’re excited to share a new partnership between Love Never Sinks and Courageous Parents Network (CPN)!

Caring for a child with Lesch-Nyhan disease can mean navigating complex medical needs, changing abilities, difficult decisions, and a wide range of emotions. Sometimes, having the right information at the right time can make the journey feel a little less overwhelming.

Courageous Parents Network offers free digital tools and resources for families caring for children with serious neurological and other complex conditions—whether you are newly navigating a diagnosis, adapting to changes, or facing loss.

Their resources include practical guidance, videos, family perspectives, and tools designed to help parents feel more informed and supported.

💙 You don’t have to navigate this journey alone.

Over the next few posts, we’ll highlight some of the CPN resources that may be helpful to Lesch-Nyhan families.

We’re grateful to be able to connect our community with additional resources and support. 💕

More info https://www.loveneversinks.org/ under Updates

08/22/2026

More links to studies on the love Never Sinks website. Link in the comments

Share your story and help us create a better future for the 30+ million people living with a rare disease in the United States.

08/22/2026

New work requirements are coming—but there's an exemption if you're considered "medically frail." NORD created this visual to explain what "medically frail" means and how the exemption works.

Learn about the new rule: https://bit.ly/3PZ8Hhe

08/03/2026

Join NORD on Wednesday, August 19, from 1–2 p.m. ET for a webinar exploring why access to medical foods and formulas matters and the coverage challenges many patients and families continue to face.

Learn about:
• What medically necessary nutrition products are
• Why insurance coverage can be difficult to obtain
• Opportunities to improve access for the rare disease community

For many people living with a rare disease, medically necessary nutrition isn't optional—it's an essential part of treatment.

Join NORD on Wednesday, August 19, from 1–2 p.m. ET for a webinar exploring why access to medical foods and formulas matters and the coverage challenges many patients and families continue to face.

Learn about:
• What medically necessary nutrition products are
• Why insurance coverage can be difficult to obtain
• Opportunities to improve access for the rare disease community

Register today: https://bit.ly/3U11gre