Earlier this year, we announced a major donation from the Daskal Family Foundation, led by Ierachmiel Daskal, MD, to fund the VEDS (Vascular Ehlers-Danlos Syndrome) Emergency Awareness Project and further our work to impact awareness of VEDS in emergency departments. Thanks to this funding, so far we have been able to: provide educational outreach on VEDS and access to…
This year, The Marfan Foundation’s webinar series is focusing on the latest research related to Marfan, Loeys-Dietz, and VEDS with leading experts giving the presentations in our regular webinar format. As always, it is free to participate in these webinars, though registration is required. The webinar schedule for the coming year currently includes the following. Please stay connected to…
The specialty pharmaceutical company, Aytu BioPharma, announced an update today for the VEDS community on the PREVEnt trial for enzastaurin. The PREVEnt trial is expected to begin in late 2022 or early 2023. This study will be investigating the ability of enzastaurin to reduce the severe complications of VEDS. There are currently no FDA-approved therapies for VEDS. Aytu BioPharma CEO Josh Disbrow shares the following: “Dear Vascular Ehlers-Danlos Syndrome Community: Thank…
Aytu BioPharma, a pharmaceutical company focused on developing and commercializing novel therapeutics, has announced the initiation of the global Phase 3 PREVEnt (Prevention of Ruptures with Enzastaurin for Vascular Ehlers-Danlos Syndrome) clinical trial of enzastaurin (AR101) for the treatment of patients with COL3A1-positive Vascular Ehlers-Danlos Syndrome (VEDS). The company has begun patient identification and study site contracting and has…
Acer Therapeutics Inc. (Nasdaq: ACER), a clinical stage pharmaceutical company focused on the acquisition, development and commercialization of therapies for serious rare and life-threatening diseases with significant unmet medical needs, yesterday announced the initiation of patient screening in its Phase 3 DiSCOVER (Decentralized Study of Celiprolol on vEDS-related Event Reduction) clinical trial of EDSIVO™ (celiprolol) for the treatment of patients with COL3A1-positive vascular Ehlers-Danlos Syndrome…
Registration is now open for the second international patient symposium on genetic aortic and vascular conditions, which is set for Sunday, August 28, 2022, at Le Méridien Etoile in Paris, France. Registration is free, but required. Please register here. Confirmed speakers include: Dr. Juan Bowen, Mayo Clinic, Dr. Alan Braverman, Washington University in St. Louis, Dr. Scott LeMaire, Baylor-St….
We are pleased to announce free Medical IDs are now available to people with Vascular Ehlers-Danlos Syndrome (VEDS) through The VEDS Movement, thanks to the generous donation from the Daskal Family Foundation for the VEDS Emergency Awareness Project. Through a partnership with Sticky J, a medical ID bracelet company, bracelets are now available to people affected by VEDS in…
The specialty pharmaceutical company, Aytu BioPharma, announced this week that it anticipates the PREVEnt trial will begin in late 2022 or early 2023. This study will be investigating the ability of enzastaurin to reduce the severe complications of VEDS. There are currently no FDA-approved therapies for VEDS. Aytu BioPharma CEO Josh Disbrow writes the following: “Aytu BioPharma remains committed to the conduct of the PREVEnt Clinical Trial testing AR101 (enzastaurin) in VEDS. Through our global Contract…
Registration is Open for The Marfan Foundation’s E3 Conference, held in Association with Hoag Memorial Hospital Presbyterian, in Newport Beach, CA, July 7-10, 2022 The Marfan Foundation, in association with Hoag Memorial Hospital Presbyterian, will hold its E3 Conference: Educating, Empowering, and Enriching Our Community, in Newport Beach, CA, July 7-10, bringing together more than 600 individuals and families…
For years I carried two backpacks. One with my volleyball gear, and one with my supplies for school. Although the fashion statement was questionable, I wore them with pride because I believed it spoke to who I was, an athlete, a student, a hard worker, and the girl who could do it all. For years I carried two backpacks,…
