What is Vascular Ehlers Danlos Syndrome (VEDS)?

VEDS is a rare, single-gene, autosomal dominant disease caused by mutations in the body’s COL3A1 gene, and is the most severe and life-threatening form of Ehlers Danlos Syndrome (EDS). Estimates vary, but the most recent state the disease affects approximately 1 in 50,000 people. The result is an impairment of the body’s normal formation of collagen, the glue that holds everything together, causing weakening of the skin, organs, arteries, and blood vessels. Individuals with VEDS present with symptoms like easy bruising, thin skin, distinguishable facial features, and hypermobile joints that may be prone to dislocation. The disease can largely be episodic, revealing itself in spontaneous arterial dissections or organ ruptures, making it especially dangerous. Those who present with symptoms of pain in a hospital setting need to be treated immediately as trauma patients, and intervention must be carefully decided on, as invasive procedures have the potential to lead to further trauma and events. The average life expectancy for those who suffer with VEDS is 48 years, though many experience life-threatening episodes long before this age. There is currently no treatment and no cure. Patients are advised to avoid certain activities, such as contact sports, elective surgeries, and pregnancies, that put a great deal of stress on the body. Additionally, many are prescribed beta-blockers or angiotensin-receptor blockers to lower their blood pressure in an effort to take some of the stress off of their blood vessels and arteries. Medical and surgical intervention are continuing to improve with increased awareness, but a great deal of research is still needed to fully understand the disease and its natural progression, as well as to learn more about potential treatment options and therapies. 

Click here to find links to further information and other VEDS organizations.

​Who are we?

The DEFY Foundation is a volunteer-run organization that was created in 2014 in honor of the Yasick family, who knows first-hand the terrifying reality of life with VEDS. In 2006, Darlene Yasick, the matriarch of the Yasick family, lost her son, Steve, at 40 years old. Soon after, the family made the connection that Darlene’s husband’s death at the age of 48 was also due to VEDS. Four years later, she lost a second son, Tom, at age 42, and then in 2013, a third son, Mike, at age 49. All of these men were loving husbands, fathers and uncles, and the disease did not stop there. The loss of Mike was followed seven short months later by the loss of his son, Chris, at only 25 years old. The Yasicks now live with three additional positive diagnoses and the potential for more. For a disease that is not well known or understood, even within the medical community, the Yasick family has suffered devastating tragedy at its hands. We know that this family is not alone, and that countless others have similar stories to share. We want to be a source of hope for all those living with VEDS and those around them that are impacted by it. It is our goal that one day, no one will have to experience the devastation it can cause.

Meet the members of our Board of Directors here, watch a video about the Yasick family here, or read our press releases here!

What do we do?

Our mission at the DEFY Foundation is two-fold – to raise awareness of Vascular Ehlers Danlos Syndrome and to raise funds to aid in medical research of the disease. Unlike more common diseases, it is likely that unless you or your family has been directly affected by it, you may never hear of VEDS, and like so many other rare conditions, it has historically not been a priority for new medical research. Through the DEFY Foundation, we would like to change that. We continue to build relationships within the community, including with other nonprofit organizations that advocate for rare diseases, in hopes of bringing light to VEDS. In an ideal world, every doctor would be knowledgeable of the complications of this disease and know what to do if someone presented with it in an emergency situation, and the public would be knowledgeable of the symptoms so that they could seek diagnoses for themselves and for their loved ones. Our efforts are aimed at bringing us closer to that ideal world.

​It also takes an incredible amount of funding to keep research moving forward, and unfortunately, that funding is not readily available. In 2016, the DEFY Foundation donated $25,000 to VEDS research being conducted at the Johns Hopkins University School of Medicine, and in 2020, we were able to donate an additional $40,000 to support these continued efforts. Additionally, we have had the opportunity to support the VEDS Collaborative, a group of VEDS stakeholders working to develop patient-centered research, and The VEDS Movement, an organization that provides many valuable resources to the research, medical, and patient communities. 

In our efforts to promote and support research on VEDS, DEFY is also proud to have supported and participated in four international scientific meetings to bring together the most prominent minds in the VEDS scientific and medical communities to discuss their research findings, gaps in the current research, and collaborate on plans for the future study of the disease. We look forward to continuing these meetings as often as possible to provide a platform for open discussion and collaboration amongst researchers and clinicians. 

All of these efforts are the direct result of the generosity of our donors, and for that we are truly grateful.