2025
2025 Million Dollar Bike Ride
At Love Never Sinks, we are a passionate community of families, advocates, and researchers dedicated to making a difference for those affected by Lesch-Nyhan Disease. Our journey began with love—for our children, for each other, and for a future where families have hope and answers.
We believe in supporting families, empowering research, and driving change. That’s why we’re raising funds for our Research Readiness program—to ensure scientists have the resources they need to move discoveries forward and to connect families with the latest advancements in treatment and care.
A portion of every dollar raised will also help provide direct support to families in need, offering them resources, guidance, and a compassionate community as they navigate this challenging diagnosis.
All funds raised helps us build a stronger foundation for research and provides support to families navigating this challenging diagnosis. Together, we can make a lasting impact!
Join us in this mission. Donate today and be part of the change! 💙
#LoveNeverSinks #SupportFamilies #FundResearch #ResearchReadiness #Suporting Families
Organizations participating in the 2025 Million Dollar Bike Ride will receive the funds raised by their team. Your donation plays a pivotal role, allowing organizations to not only support rare disease research, but make a direct impact on patients and families in their rare disease community. Thank you!
Million Dollar Bike Ride is coordinated by Penn Medicine's Orphan Disease Center. Funds from the 2025 Million Dollar Bike Ride are being distributed to teams through partnership with rare-disease nonprofit, Uplifting Athletes.
Fueling Hope Through Research Readiness
‘Research Readiness’ refers to the state of being adequately prepared to engage in and support research activities effectively. It involves having the necessary infrastructure, resources, knowledge, and strategic planning to facilitate meaningful and impactful research.
Key Components of Research Readiness
Patient & Community Engagement – Education in research readiness empowers families with clear, accessible information on their disease, clinical trials, genetic therapies, advocacy, and research participation. It helps them make informed medical decisions, advocate for better care, and connect with relevant studies. By bridging knowledge gaps, fostering confidence, and encouraging community engagement, families play a vital role in shaping research priorities, contributing data, and driving progress toward better treatments.
Strategic Planning – Setting clear objectives, timelines, and methodologies to guide research efforts.
Collaboration & Partnerships – Establishing networks with researchers, clinicians, industry partners, and advocacy groups.
Education & Awareness – Providing training and information to stakeholders on research processes, goals, and expectations.
Regulatory & Ethical Compliance – Understanding and adhering to legal, ethical, and institutional research requirements.
Data Collection & Management – Ensuring high-quality, standardized, and accessible data for research purposes.
Funding & Resource Allocation – Securing financial and material resources to support ongoing and future research.
2024 Million Dollar Bike Ride
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
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 went even further? For every dollar we raised, up to $30,000, the ODC matched it. Researchers studying Lesch Nyhan applied for our RFA grant. Love Never Sinks, with the help of a group of doctors, carefully assessed the applicants and makes recommendations. Then, the ODC made 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 in 2024 went to Gullia Bernardini @ Universita degli Studi di Siena, Departimento di Biotecnologie, Chimica e Farmacia for a study about Exploring the profile of Extracellular Vesticles (EV’s) in Lesch-Nyhan Syndrome (LNS)
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.
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!
“I don’t ride a bike to add days to my life. I ride a bike to add life to my days”
