Casting a Light on Rare Disease
Thank you for everyone’s support for a successful Illumination 2017. Please check back for periodic updates and announcements regarding Illumination 2018!
Thank you to our Sponsors!
Thank you to all of our sponsors for making Illumination 2017 a huge success
Design Build Leader
Kai Design & Build
Food and Beverage Sponsors
European Style Bakery
Lettuce Entertain You
Paramount Events and Catering
Saint Lou’s Assembly
Bob and Jane Clark
Shawn Clark and Jenni Moran
Katie and William Feuerbacher
Emily and Daniel North
Todd and Sara Weaver
Associate Host Committee
Rick Bast, II
Retinal vasculopathy with cerebral leukodystrophy (RVCL) is a rare, genetic condition that primarily affects the central nervous systems. Research for RVCL impacts other diseases such as Diabetes Mellitus (commonly known as Type I or Type II Diabetes), Alzheimer’s Disease, Dementia, Vasculitis, Vessel Damage, Aging Disorders, Familial Chilblain Lupus, Aicardi-Goutieres Syndrome, Systemic Lupus Erythematosus.
Introduction to Illumination
Building on the momentum from the highly successful 2016 event, Illumination is returning for its second year on Friday, October 27, 2017. It is a one-of-a-kind Halloween celebration, that in addition to raising money and awareness for a great cause, is once again going to be THE most unique Halloween event of the year.
Illumination is not just an event, but an immersive, interactive playground of light. It includes a fantastical, otherworldly party atmosphere, an imaginative art auction and live performances throughout the evening. This is a costume party – so come with your best foot forward!
It is with this that we ask you to come help us cast a light into the darkness.
Who We Are
What is Illumination?
Illumination is casting light into darkness. It is the act of enlightenment, and the ability to spark awareness of the journeys that are often relegated to the shadows.
Together we are determined to find a cure for Retinal Vasculopathy with Cerebral Leukodystrophy (RVCL). RVCL is a rare and fatal generic condition affecting the central nervous system, causing the deterioration of small blood vessels in the brain and eyes of those affected. Most patients begin experiencing vision loss and strokes in their early 40s. They have an average lifespan of 8 years following their first symptoms.
30 million people in the United States are living with some form of rare disease. That’s close to 1 in 10 people. Rare disease affects nearly all of us. We believe that together we can make a difference building on last year’s success. We raised over $400,000 for Dr. John Atkinson and his lab at Washington University. We look forward to your partnership and exceeding our goals in 2017.
What is the Clayco Foundation?:
The Clayco Foundation is a tax exempt 501(c)(3) entity that supports multiple charitable organizations in the communities where Clayco, Inc. is actively engaged in business.
Although The Clayco Foundation supports numerous charitable organizations, all of the donations raised through Illumination 2017 will directly fund research for Retinal Vasculopathy with Cerebral Leukodystrophy (RVCL); a very rare, genetic condition that affects the central nervous system.
The John Atkinson Research Lab at Washington University is:
- Creating the best mouse model system to determine how TREX mutations disrupt normal cellular function, understand how it works (pathophysiology) in a living system, and screen for the most effective therapeutic agents.
- Collaborating with pharmaceutical companies and the FDA to gain access to or produce a drug called aclarubicin (ACM) for human use.
- Leading collaboration of four key research groups: Washington University in St. Louis, University of California, National Institutes of Health, and University of Texas Southwestern.
- Planning a scientific symposium to provide enhanced data sharing, discussion of results and expansion of our knowledge base with researchers in the U.S. and globally.
This all leads to potential positive implications for:
- Systemic Lupus Erythematosus
- Diabetic Retinopathy
- Aging disorders
- Blood vessel deterioration disorders (vasculopathies)
- As well as other related diseases
Ellen was diagnosed in 2005 with a terminal genetic disease that effects blood vessel reproduction (or lack of) throughout the body. While the disease impacted everything, the main damage was to the eyes and brain. Ellen’s outlook was very grim and expected to move at a rapid pace.
Because she was in great physical shape and the toughest person we have ever known, she blew past all the doctors’ dire predictions and even with major evidence of damage, continued past their projections and held on to an amazing quality of life up until the last several weeks.
Never in all her trials and adverse conditions did she ever complain or whine or do anything that was less than courageous and downright classy. In her last moments, she was beautiful. She was in no pain and was not suffering.
Ellen and Bob started dating when they were 15. Married for 25 years. 5 children and 3 grandchildren, they had an extraordinary run. Their relationship was full of ups and downs. Strengths and weaknesses, heartache, tragedy and blessings beyond their young, wild dreams. Ellen was a passionate person, defined purely by her fierce motherhood and giving spirit. She cared about everyone she met and made no foes along her journey.