Keeping our staff, supporters, families and friends healthy and safe is always critical
for us – with Covid-19, this becomes an even greater duty and leading priority.
Additionally, I remain equally steadfast in my commitment to leading the charge and laying
the groundwork, as we continue to be leaders in the critical research and cure of RVCL.
In this dark moment, I promise
Illumination will continue to shine its light.
We will keep you apprised of our innovative and dynamic 2020 event plans and ambitions, as
we know experiences of joy, surprise, and wonder are needed more desperately now, than ever.
Thank you for being our friend, companion and supporter.
CASTING A LIGHT ON RARE DISEASE,
Our united fundraising has strengthened RCVL research internationally, and accomplished:
- Completing the first clinical trial and a long-term patient monitoring study
- Starting second and third clinical trials in 2020
- Generating 3 models of the disease, which will permit testing of new therapies
- Identifying candidate drugs that we hope will lead to personalized therapies
- Initiating first studies of gene editing, which may lead to a new treatment approach
- Recruiting a collaborative team of top researchers from Washington University in Saint Louis, the University of Chicago, the University of Michigan, and from private biotech. The group combines medical, scientific, and drug-development expertise in their search for a cure.
- For more information on our accomplishments and research, go to https://rvcl-research.wustl.edu/
Illumination is an exceptional evening of celebration, community, and fundraising set in a landscape of illuminated interactive installations, delightful playgrounds of light, illuminated participatory contraptions, lit characters, fiery parades, glowing processions and radiant spectacle.
LIGHT ART EXPERIENCE
Leading the cure for Retinal Vasculopathy with Cerebral Leukodystrophy (RVCL)
The Clayco Foundation is determined to find a cure for Retinal Vasculopathy with Cerebral Leukodystrophy (RVCL). RVCL is a rare and fatal genetic 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, and have an average lifespan of eight years following their first symptoms. Rare disease affects nearly all of us. 30 million people in the United States are living with some form of rare disease; that’s close to 1 in 10 people. We believe that, together, we can make a difference building on last year’s success. We look forward to your partnership and exceeding our goals in 2020.
In addition to raising funds for an invaluable cause, Illumination is devoted to discovering, attracting, mentoring, and directing over 100 diverse professional creators, emerging artists, and performing partners who are all committed to amplifying the Art of Light — illuminated sculpture, installation, experience, costume, objects, and effects. Illumination’s collaboration with the artist community makes for a particularly special event symbolic of hope and transformation.
Come help us cast a light on rare disease!
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.
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 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
In the past 5 years, we have proudly raised $4.5 million directed towards cutting edge, leading research to cure RCVL. For information on how you can invest in our research, join our team, and save lives, please contact Roz Skozen, Director of Community Relations, Clayco, at firstname.lastname@example.org or 312.239.1569
Lifetime Contributions to the Clayco Foundation
The Clayco Foundation would like to thank its contributors who’s loyalty and friendship have been key to achieving our goals. Thank you to the donors and friends who have consistently made significant contributions since our inception. Collectively, these funders have generously contributed a total of over $5 Million and individually given up to $100,000 each. We are exceedingly grateful.
Bob & Susan Wislow
Karen Zelden & Ralph Senst
Lawrence & Christy Chapman
Russ & Allison Burns
Chris & Carolyn McKee
Gregg Scurto & Hermann Schneider
Ivana & James Preuss
Jay & Karen Case
Lamar & Lisa Johnson with LJC
Michele & Donn Lux
The Nardick Family
Alan Schachtman & Susanne Hutcheson
Amjad Alkadri PC
Andy Ray with ABCO
BAKER & MCKENZIE
Bill Brown with Ben Hur Construction
Bob Blitz with Blitz Baedgett Deutsch
Chuck Hayes with Hayes Industries
CK II Contracting
Clifton Larson Allen
Clover Architectural Products
CTI Ready Mix
Eco Recycling Inc.
Evan Shook with FacadeTek
Flodd Bros. Disposal CO
Gina Suarez with Harmon Inc
Jabod & Hefner
Jerry Hogan with Façade Concepts
John & Betsey McLinden Foundat
John & Sharon Hoffman
Jones, Skelton & Hochuli
Joseph Alonzo with Sunbelt Rentals
KCP Concrete Pumps Ltd.
Kevin & Patty McKenna
KJ & LS Rosenthal
Mark Marvin with Marvin Group
Mary Ann Lemonds
Matt and Dee Moran
Michael Johnson with Kone
Michael Peterson with USAFP
Mike & Deborah Wurtsbaugh
Nancy & Bob Russell
Pam & Bud Pharris
Paul Grosse with Carollton Bank
Roy Eller with Patriot Ready Mix
The Conservation Center
The Net Lease Group
Tim Crowley with PimCo
Tom & Lisa Carnahan
Tory Cosich with Proven IT Systems
US Private Wealth Management
White & Williams
Gratitude to Our Past Food and Beverage Sponsors – Thank You!
In Kind Sponsors
Mariane Ibrahim Gallery
Castle Party Rentals