Casting Light on RVCL

Ever since we started hosting Illumination events, we’ve focused on bringing light into the darkness. It has been a great theme for one of the best Halloween parties of the year, and those of us who have attended past Illumination events have all experienced some memorable spectacles and performances that pushed the limits of our imagination. However, this theme extends far beyond an annual party and serves as a powerful metaphor for our ultimate goal: to cast a light on rare disease research and our search for a cure for RCVL.

Retinal Vasculopathy Cerebral Leukodystrophy (RVCL) is a rare genetic disease that is characterized by the deterioration of small blood vessels. The condition is often misdiagnosed because symptoms vary from patient to patient and can resemble other diseases. That is why today, we are pleased to launch RVCL.org to provide education and support for patients, researchers, and doctors. There is currently no cure for RVCL, but we aim to raise awareness through this site that is supported by The Clayco Foundation.

Patients have a difficult time finding doctors that can quickly or accurately diagnose RVCL because of the rare occurrence of the disease and due to the overlapping symptoms with more common diseases, patients can often be misdiagnosed with multiple sclerosis, diabetes, SLE, vasculitis, and brain tumors. Nonetheless, if these RVCL patients can be diagnosed earlier, research efforts can be furthered, and these patients need not go through unnecessary treatments and procedures. Helping patients, doctors, and researchers dealing with RVCL is a primary focus of The Clayco Foundation.

Collectively, rare diseases like RVCL are not all that rare; there are an estimated 30 million people in the United States alone living with some form of rare disease. Raising funds for efforts to advance research and develop cures for these diseases is critical, as many times they aren’t a primary focus.

The fundraising efforts led by The Clayco Foundation supports advancement of clinical trials, long-term patient monitoring studies, disease models for testing new therapies, the study of new gene-editing technologies, and more while also bringing together some of the top researchers from the University of Pennsylvania, Washington University in St. Louis, the University of Michigan, and other top institutions in the search for a cure.

Initiatives like our new website are made possible by donated efforts. We are so grateful for all of the support we’ve received and look forward to providing regular updates via this site. Please visit our LinkedIn page to stay up to date on the research and support our cause.

Learn more and follow along here.