Additional Ventures Foundation

Project singular - Additional Ventures is investing in building a genomics registry for single ventricle patients and their families in the united states in order to understand the genetic causes of single ventricle heart disease as well as the genetic contributors to the many associated co-morbidities. At least 5,000 single ventricle patients and their immediate family members (parents and siblings) will be recruited and consented virtually with dna sequencing kits mailed to their homes as well as consented and their dna collected in cardiac clinics. Whole genome sequencing will be conducted with participants' samples. The deidentified dataset will be made available for free to all qualified researchers worldwide, fueling not just one research study but many. In 2022, Additional Ventures began the registry build, conducted a soft launch, and prepared for full launch in 2024.

Single ventricle investigators meeting - Additional Ventures held its second annual and first in-person single ventricle investigators meeting (svim) october 7-9, 2022 with more than 170 attendees, 50 plus plenary sessions, 40 plus poster presentations and 16 plus breakout sessions. This was the largest event of its kind for the single ventricle research community, featuring more than 120 speakers across multiple disciplines including basic science, clinical care, engineering, and translational medicine. Presentations addressed the following areas of single ventricle research: understanding single ventricle etiology, defining biological mechanisms of outcomes, addressing complications and comorbidities, developing functional cures, developing functional cures, and optimizing transplant outcomes.

Single ventricle speaker series - responding to a need to provide a forum for single ventricle focused investigators across basic science, tissue engineering, clinical care, and genomics, Additional Ventures conducts a biweekly virtual seminar series over 6 months of the year. Each session addresses ongoing research efforts in key knowledge gap areas identified in the organization's research roadmap, with presenters spanning early career to senior investigators, and topics including single ventricle etiology, biology of outcomes, clinical sequelae, and function cures. In 2022, there were hundreds of multi-disciplinary researchers who participated in the speaker series.