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The Ehlers-Danlos Society is excited to announce the grants selected for funding following the latest round of requests for proposal. These four projects focus on improving our understanding of topics with profound impacts on individuals who live with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD): diagnosis, pain, life-threatening vascular complications, and genetic evaluation.
“This round of grant proposals featured some incredibly exciting and needed research studies and projects that have the potential to change and even save lives,” stated Lara Bloom, International Executive Director for The Ehlers-Danlos Society. “We cannot thank our donors enough for allowing us the honor of supporting these critical projects.”
The total grant funding includes $200,000 allocated to research, which will be awarded to three projects.
Dr. Sherene Shalhub and Dr. Peter Byers have been awarded $75,000 for their project, “Outcomes of aortic and arterial surgical interventions in individuals with Vascular Ehlers-Danlos Syndrome”. The two will lead a team of researchers conducting a thorough review of 1000 vascular EDS patient’s medical records from multiple clinicians to assess the effectiveness of a variety of approaches used to help patients with vascular Ehlers-Danlos syndrome (vEDS) prevent, survive, and recover from life-threatening vascular events.
Dr. Marina Colombi’s team will receive $50,000 for “Proteome profiling for hypermobile Ehlers-Danlos syndrome/hypermobility spectrum disorders to unravel pathogenetic mechanisms and identify potential biomarkers supporting clinical diagnosis,” which will examine skin samples from individuals with hypermobile Ehlers-Danlos syndrome (hEDS) and HSD in an effort to better understand how hEDS and HSD alter these connective tissues with the goal of identifying recognizable differences that can help definitively diagnose individuals with these conditions as well as point towards potential treatment and intervention strategies.
Dr. Fransiska Malfait has been granted $75,000 to lead her team in “Exploring Causal Pathways for Chronic Musculoskeletal Pain in the Ehlers-Danlos syndromes,” which will investigate both humans with hEDS and classical Ehlers-Danlos syndromes (cEDS) as well as mice with cEDS in a two-pronged approach to better understand how pain manifests in these conditions on a molecular level and determine if these findings might be able to inform new diagnostic or treatment approaches.
An additional fund of $75,000 has been awarded to Dr. Raymond Dalgleish to refine and improve the Ehlers-Danlos Syndrome Variant Database, which has been collecting sequencing data from Ehlers-Danlos syndromes research for over 30 years. This collaborative database is widely used worldwide by both clinicians and researchers but has limited use in its current, outdated form. This funding will allow Dr. Dalgleish and team to update obsolete software, improve data security, and add new features. This grant will be supported by the Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) research fund. The Ehlers-Danlos Syndrome Variant Database is an essential tool required by the HEDGE research team as they sequence 1000 patient genomes in a quest to find a genetic cause for hEDS.