Patient-Centered Education and Empowerment

Surveyed 224 living liver donors in New York State to study their post-donation experiences, including surgical recovery, costs, employment impact, and long-term well-being.

Manages a standardized data submission system for liver transplant professionals and uses collected data on transplant volumes and outcomes for program monitoring, peer review, and quality assurance to improve patient care across member institutions in New York State.

Offers non-clinical, informational resources and outreach to patients, families, donors, and transplant professionals in New York State, including a downloadable brochure on living donor experiences and up-to-date information about liver transplantation, without providing medical advice or treatment.

Implements programs aimed at expanding health equity and improving access to care for individuals with genetic aortic and vascular conditions on a global scale.

Empowers individuals and supports healthcare providers through research on Marfan syndrome, Loeys-Dietz, Vascular Ehlers-Danlos, and related genetic aortic and vascular conditions to improve quality of life and longevity.

Links individuals and families to over 70 U.S. and global institutions with expertise in diagnosing and treating genetic aortic and vascular conditions.

Creates and provides easy-to-understand educational resources about Marfan syndrome and related conditions for patients, families, and healthcare providers.

Runs a Community Fundraising program and recruits volunteers for campaigns, event setup, outreach, social media advocacy, and content sharing to expand public awareness and support.

Hosts regular virtual support groups via Zoom, including specialized events like Teen Talk and Kids Club, to address specific concerns and build community among individuals and families affected by genetic aortic and vascular conditions.

Finances the creation of educational materials and resources through grant funding from external foundations such as the Chu and Chan Foundation.

Organizes an annual conference and full-day regional symposiums across the U.S. to provide medical education and foster community connection for individuals affected by Marfan, Loeys-Dietz, VEDS, and related conditions.

Provides medical and psychosocial information through a bilingual phone and email helpline, reaching approximately 5,000 people annually, supported by website content and educational webinars.

Provides safe, structured camping experiences for children and families affected by Marfan syndrome, Loeys-Dietz, VEDS, and related conditions to support typical summer experiences in a medically aware environment.

Coordinates events across the United States and online to raise public awareness and funds for genetic aortic and vascular conditions, including patient education and community engagement components.

Offers educational resources on the benefits of therapy and how it can help individuals manage chronic pain and emotional challenges associated with Marfan syndrome.

Provides education and support programs specifically designed to help teens affected by genetic aortic and vascular conditions transition from pediatric to adult healthcare systems.

Trains individuals and organizations in methods to improve health and science communication, provides consulting to advance diversity, equity, and inclusion, and offers coaching and organizational development to enhance social equity in public and private sector institutions.

Develops and tests methods to improve public understanding of scientific evidence, counteract health misinformation, and enhance the health information ecosystem through peer-reviewed studies, publications, and books on science denial, vaccine hesitancy, and infodemiology.