Repurposed drug may help stabilize vision in rare disease (Links to an external site)
Author: Brian Huxtable
Rare Diseases Day 2024 (Links to an external site)
Dr. Andria Ford presented “Cerebral oxygen extraction predicts brain lesion progression in Retinal Vasculopathy with Cerebral Leukocencephalopathy, a monogenic microvasculopathy” at the Rare Diseases Day Symposium 2024 in EPNEC at Washington University School of Medicine.
New publication quantifying RVCL disease progression (Links to an external site)
Drs. Wilson Wang and Rajendra Apte and colleagues publish novel insights into the quantifying RVCL disease progression using OCT, OCT-A, and FA: “Multimodal Structural and Functional Characterization of Retinal Vasculopathy with Cerebral Leukoencephalopathy” in Ophthalmology Retina.
2021 ClayCo Foundation Innovation Research Awards
Congratulations to the four scientists and their teams who recently were awarded two-year grants by the Clayco Foundation for RVCL research projects. One theme of these new grants is development of model systems that are critical to determining how cells are damaged by RVCL. A model system also will greatly help development and assessment of new RVCL therapeutics. […]
Rarest of Them All: Ultra-Rare Rheumatic Diseases (Links to an external site)
Multisystem autoimmune rheumatic diseases are rare or ultra-rare disorders linked to significant mortality and morbidity. However, with the rise of new technology, including data registries and advanced genetic analysis, rare rheumatic disease research is being propelled forward to inform future therapeutic options and improve patient outcomes.
In light of Rare Disease Day 2021, Dr Jonathan Miner, MD, PhD, discusses his work and contributions to the rare disease space, and speaks to the importance of research and the management of patients with rare rheumatic diseases.
Rare Disease Research Provides Insight, Advances in Rheumatic Disease (Links to an external site)
Dr. Jonathan Miner was interviewed by writer Allison Plitman for The Rheumatologist and speaks about his research into rare diseases, such as RVCL.
Bob Clark describes his extremely personal experience with CRV/RVCL (Links to an external site)
In his blog (Bob Clark Beyond: More than just a blog), Bob Clark describes his extremely personal experience with CRV/RVCL. After losing his wife Ellen to the disease, and to honor her memory, he worked with Maya Lin (the creator of the Vietnam Veteran’s Memorial) to construct the Ellen S. Clark Hope Plaza at Washington University. They wanted to create “a place that would allow visitors who are coming here – many for very difficult medical situation – to be transported to a beautiful place that would give them a sense of comfort, peace and hope.”
The Clayco Foundation also is a major contributor to our RVCL Research and Therapeutics Center.
12th Annual Cure CRV Golf Classic
With social distancing and other precautions, the 12th Annual Cure CRV Golf Classic was held by the Morey Family and Friends in Bentonville, Arkansas. All proceeds help fund CRV (RVCL) research at Washington University School of Medicine.We thank the Morey family and friends!!
Spotlight on RVCL and Dr. John Atkinson (Links to an external site)
Article titled “Spotting Birds of a Feather” featured on Global Genes talking about John Atkinson’s research into RVCL and the initiative to develop therapies for this rare condition.
Decades of dedication lead to drug trial for rare, fatal illness (Links to an external site)
Article explores the research efforts to develop therapies for RVCL and the clinical trial evaluating the use of an old cancer drug to treat this devastating blood vessel disease.
RVCL Center Family Meeting and Videos
We thank everyone who attended our half day family meeting held Saturday August 26, 2017. This educational meeting summarized new research studies, provided updated information about the recently begun clinical therapeutic trial, and offered advice about genetic testing, prenatal diagnosis and alternative reproductive strategies. You can watch each presentation that was made at the family […]
First clinical trials begun
The first clinical trial utilizing Aclarubicin for treatment of RVCL commenced December 5, 2016 at Washington University School of Medicine. Two patients initially received infusions of Aclarubicin for four consecutive days with blood work and other testing prior to and at the conclusion of the infusion. The study will be conducted for up to two […]
Robert Clark of Clayco donates to Washington University for study of wife’s fatal disease
Robert Clark and his partners at Clayco have pledged $4.1 million to Washington University for research into the rare disease cerebroretinal vasculopathy. Clark’s wife Ellen died five years ago at age 50 from the disease that affects blood vessels in the brain.
$4.1 million Clayco Foundation gift aids research into rare disease (Links to an external site)
A $4.1 million gift from The Clayco Foundation will advance research led by John P. Atkinson, MD, into a rare but deadly blood vessel disease called cerebroretinal vasculopathy.
Rheumatologist John P. Atkinson, MD, Continues Research into Rare Diseases (Links to an external site)
John P. Atkinson, MD, is a great detective. But instead of solving murder mysteries, he unravels the mysteries behind diseases—diagnosing them, understanding their origin or cause, and identifying effective treatments.
Caregiver inspires crusade: Patient spearheads fundraising efforts for research into rare disease (Links to an external site)
For 20 years, Kim Morey wondered and worried if she had inherited the devastating disease that killed her father at age 49. But she continued with her life, getting married and having three children, in her hometown of Bentonville, AK.