Our Story...Past, Present and Future

Tragically, Angelo passed in June 2019 at the age of 49 due to an aortic dissection and rupture caused by complications related to vEDS leaving our family heartbroken but determined to find solutions. He collapsed and was rushed to the hospital. In the next few months, he had a few surgeries related to complications of that event and many, many, many tests. After all the test results came in, he learned that he was positive for a rare genetic condition known as vascular EDS. 

We did the research, completely terrified at what we were reading about this condition. Angelo knew the risks, but like so many, we hoped that he wouldn’t become part of the statistics. 

Tragically, Angelo passed in June 2019 at the age of 49 due to an aortic dissection and ruputre caused by complications related to vEDS leaving our family heartbroken but determined to find solutions. 

Additionally, our father passed away suddenly in 1995 at the age of 51, caused by what is now assumed vEDS complications, as it now all fits and feels less mysterious.

Since Angelo’s diagnosis and passing, we learned that vascular EDS is genetic and first line family members should be tested. We have come to learn that four other family members have confirmed vEDS diagnoses. At present, there is no treatment or cure for someone with vascular Elhers-Danlos Syndrome. 

Angelo’s death may have been the impetus for the Nania family to put so much effort into raising funds for organizations like The VEDS Movement, however it is the four family members currently living with diagnosis who are the passion and drive behind our dedication and investment to the cause, in the hopes of someday seeing a successful treatment for all vEDS patients. 

In 2022, our family hosted their first fundraiser in support of The VEDS Movement, and we are committed to continuing that type of event, among other new events in support of the vEDS community.

There are few things in this world in which we have total control; if the only thing, as a family, that we have in our control, is jumping in and getting involved and spreading awareness while raising money, then we hope to have one of the loudest voices for vEDS, for our four family members who have this condition, and other families who are affected by this diagnosis. 

Going forward, our plan is to continue to raise awareness, to raise money, and to pray like no one has ever prayed before so that future trials yield treatment to manage vascular Elhers-Danlos Syndrome.