2024 Million Dollar Bike Ride

We were happy to participate in our 3rd Million Dollar Bike Ride on June 8th, 2024 in Philadelphia, PA!

This Ride was hosted by the Orphan Disease Center for rare disease communities to support, increase awareness, and raise money for rare disease research. This year marked our third year raising money to support Lesch-Nyhan research for the Lesch-Nyhan Syndrome community during the 2024 event. It was a wonderful opportunity to meet families from the community, share stories with one another, enjoy time together, and support an important cause!

Event Activities

• Families get together – a community dinner. (TBD)

• Meeting Dr. Wilson and his team - Dr. Wilson will give his latest update on his Lesch-Nyhan research at the Orphan

  • In Person Meeting June 7, 2024 from 10-11 am EST USA

    TRL room 1201

    125 S 31st St,

    Philadelphia, PA 19104

  • Zoom Link: https://pennmedicine.zoom.us/j/6042614699

  • Facebook Link: https://www.facebook.com/share/2eiNNe4gh6JWTkpZ/?mibextid=9l3rBW

• Disease Center. (TBD)

• Riding for Research – Joining the ride by walk, riding a bicycle or volunteering for the event or at our booth to spread LN awareness at the event. Sign up here!

Did you know that our community's fundraising efforts can go even further? For every dollar we raise, up to $30,000, the ODC matches it! And here's something exciting: researchers studying Lesch Nyhan can apply for our RFA grant. Love Never Sinks, with the help of a group of doctors, carefully assesses the applicants and makes recommendations. Then, the ODC makes the final decision. It's amazing to see how our contributions can make a real difference in supporting important research!

The money in 2022 went to Jasper Visser in the Netherlands @Radboud University for a dopamine study and in 2023 went to Sharon Kolk also in the Netherlands @ Radboud University for a study about Unraveling the HGprt functioning in the fore- and mid brain development using brain organoids.

The money raised during the Million Dollar Bike Ride is there for any researcher, worldwide, who studies Lesch Nyhan to apply. At the same time Love Never Sinks -Lesch Nyhan participates in the Million Dollar Bike ride to represent families living with Lesch Nyhan. Sharing information at our booth and engaging with other nonprofits and Rare Diseases. We bring a voice to Lesch Nyhan, advocate for treatments, gather as friends and families to share experiences and have our voices heard.