It is with deep sadness that we share the passing of Ian Michael Kukfa (2006–2025) on August 27, 2025, from complications of vascular Ehlers-Danlos syndrome (vEDS).
Ian was a son, brother, grandson, cousin, nephew, and friend who filled every room with his humor, curiosity, and love. He faced more challenges than most, yet he lived with courage and joy, finding happiness in family traditions, time at the beach, late-night games, his beloved Knicks, and simply being with the people he loved.
In his final act of generosity, Ian chose to donate his body to medical research, hoping that his journey might help others in the future.
A memorial service was held on September 4, 2025, at Christ Church, Toms River, NJ, and in lieu of flowers, the family kindly asked that donations be made in Ian’s memory to The Ehlers-Danlos Society.
His mom, Kara, has been a strong voice in The Ehlers-Danlos Society Comorbidity Coalition, representing parents and those with vEDS. We are keeping Ian’s family close in our hearts and honoring his life, a life full of love, resilience, and laughter.
