Rare Disease & Medical Research

Raising $10M for RVCL Research Graphic from the Clayco Foundation

Investing in Hope for Families Living with RVCL

The Clayco Foundation is committing $10 million to Penn Medicine to advance groundbreaking RVCL research, bringing new hope toward treatments for this rare genetic disease.

Graphic displaying the acronym RVCL, which stands for Retinal Vasculopathy with Cerebral Leukoencephalopathy, on a gradient background of pink and blue, representing awareness and advocacy for this rare genetic disease.

Turning Loss Into Hope — A Breakthrough in RVCL Research

A heartfelt story of love, loss, and hope—how Ellen’s battle with RVCL inspired a lifelong mission to fund research, advocacy, and treatment breakthroughs through The Clayco Foundation, bringing real progress to families affected by rare diseases.

Guests gathered at Moonlight Studios for Illumination Chicago, The Clayco Foundation’s annual Halloween gala celebrating light, art, and community in support of rare disease research for RVCL, honoring the legacy of Ellen Clark and the vision of Shawn Clark.

Illumination Chicago 2025: Turning Hope Into Action

The Clayco Foundation’s Illumination Chicago gala, founded by Shawn Clark in memory of Ellen Clark, unites art, light, and community to support rare disease research for RVCL. Since 2016, this inspiring event has raised over $1.2 million to fuel hope and discovery.

Rare Disease Day: The Ongoing Fight for a Cure!

Every year on February 28th, the world comes together to recognize Rare Disease Day—a day dedicated to raising awareness and driving meaningful change for the 300 million people living with rare diseases.

Illumination 2024: Uniting Chicago for Rare Disease Research

Chicago’s premier Halloween gala, Illumination, is not just a celebration but a powerful platform to raise hope. The event is taking the city by storm on October 26th at Moonlight Studios to raise money and awareness for rare diseases.

Not-So-Rare Realities: Myths Crumble, Hope Rises

‍RVCL causes small blood vessel deterioration and is difficult to diagnose since symptoms differ and can mirror other illnesses.

Illumination 2023: An Underwater Success!

Illumination 2023: Underwater was a tremendous success last weekend! Since it started, Illumination has been one of my favorite events to advocate for and attend. It was an unforgettable night filled with musical performances, a laser light show, glowing artwork, food, and great friends. Most importantly, the 1200 people who joined us at Vertiport Chicago raised $1.1 million to cast a light on rare diseases and support the search to cure RVCL. This has personally impacted me, as my late wife Ellen was diagnosed with RVCL in 2005.

2023 Nobel Prize in Physiology or Medicine and Penn’s RVCL Research Center

Congratulations to Katalin Karikó, PhD, and Drew Weissman, MD, PhD, for receiving the 2023 Nobel Prize in Physiology or Medicine! Their revolutionary work has paved the way for the development of the mRNA COVID-19 vaccines, showcasing the significant strides science can achieve. Their research, carried out at the prestigious University of Pennsylvania, has changed the course of global health.

On the Pathway to RVCL Progress

The Clayco Foundation is on the Pathway to Progress! Earlier this week, we welcomed Dr. Jonathan Miner, MD, Ph.D., to give insight into the latest developments in Retinal Vasculopathy with Cerebral Leukoencephalopathy (RVCL) research.

Pfizer Boulder Campus

Although Pfizer became more of a household name in 2020 for its manufacture and distribution of COVID-19 vaccines, it has been a generator of scientific breakthroughs through the cooperation of its talented workforce since its founding in 1849. Pfizer’s vision is to change patients’ lives by fostering innovation that makes the world a healthier place – and Clayco was able to aid in its efforts by developing one of its campuses in Boulder, Colorado. The integrated delivery project renovated two buildings on Pfizer’s 4.5-acre site with advanced facilities like specialized laboratories and equipment, a site focused on the discovery, development, and commercialization of small molecule cancer treatment, upgraded workstations, collaboration spaces, and more.

Recognizing Rare Disease Day

Every year on February 28th, individuals and institutions worldwide amplify their efforts to raise awareness for Rare Disease Day. 400 million people worldwide live with a rare disease, and far more are impacted daily by them. By some estimates, rare disease affects 3.5% – 5.9% of the population, and many of those affected are lacking the support that they need. My late wife Ellen passed away after a rare disease diagnosis in 2010. Since then, I’ve done what I can to invoke sustainable change to better the lives of patients, families, and carers. The Clayco Foundation is committed to supporting meaningful research to find treatments and a cure for Retinal vasculopathy with cerebral leukoencephalopathy (RVCL), a rare genetic disease, year-round.

Penn Medicine's RVCL Research Center

The Clayco Foundation is committed to supporting meaningful research to find treatments and a cure for Retinal vasculopathy with cerebral leukoencephalopathy (RVCL), a rare genetic disease. We have made great strides and progress over this past year. Illumination 2022 was an incredible record-breaking gala for The Clayco Foundation in October, where we raised $1.1 million to help support the search for a cure for RVCL and to help pave the way for cures for all genetic orphan diseases.

Illumination 2022 - Circus of Light

Illumination 2022 Circus of Light was an incredible record-breaking gala for The Clayco Foundation! Through ticket purchases, sponsorships, and the generosity of various donors, we raised a record-breaking $1.1 million to help support the search for a cure for the rare genetic disease RVCL and to help pave the way for cures for all genetic orphan diseases.

Illumination 2021: A Return to the Light

There’s no denying that 2020 was a dark year for all of us, but we still have a whole lot to look forward to. After a year of postponement, Illumination is coming back this fall on October 23rd, 2021. Held at the Vertiport Chicago Heliport, it’s going to be our largest and most experiential event to date, and we can’t wait to share what we’ve been planning. Illumination 2021: A Return to the Light will be the 5th event we’ve hosted to help raise funds to find a cure for RVCL, a rare genetic disease that affects the central nervous system. Held annually around Halloween, it offers the opportunity for everyone to dress up in their best costumes and immerse themselves in an experience unlike any other.

The Lesser-Known Reality of Rare Disease

Memorial at the Ellen S. Clark Hope Plaza, Washington University School of Medicine. The pandemic has demonstrated a lot of things about the medical community and the reality of disease in this day and age. For one thing, when something like COVID affects the entire global population, all hands are on deck in figuring this thing out. There is no end to the necessary resources like time and the energy of the greatest minds in the scientific community. Many of us can see the value of putting so much into solving one of the most difficult challenges of our time.

Rare Disease

Rare disease, and in particular cerebroretinal vasculopathy (CRV), is acutely personal for my family, having lost two beloved family members to this devastating illness. The first member of the family to succumb to CRV was David Lending, Ellen’s father, who died at the young age of 52 in 1989. At the time, little was known about CRV, and we ourselves were clueless as to what was happening to him. It was as if all of a sudden his vision was failing, he was limping, and he seemed distant, which was very much unlike him. A little over ten years later, when Ellen was in her early 40s, she too began to exhibit inexplicable signs that something was off. She started to forget simple words and was having trouble with her vision. We saw experts around the country and were unable to figure out what was happening to Ellen until we came to the Washington University School of Medicine in St. Louis, where she was diagnosed with the genetic disorder that leads to the development of CRV. Dr. John P. Atkinson was part of the research team that originally identified the rare blood vessel disease in 1988 and then the genetic defect that is responsible for CRV in 2007.