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. […]
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.
Dr. Jonathan Miner was interviewed by writer Allison Plitman for The Rheumatologist and speaks about his research into rare diseases, such as RVCL.
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.
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!!