The Children's Tumor Foundation
11/05/2025 | Press release | Distributed by Public on 11/05/2025 13:43
In Memory of Adam Goodkind
In Memory of Adam Goodkind
November 5, 2025Extraordinary Spirit
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A man with short dark hair, wearing a light purple button-up shirt and a hearing aid, against a plain gray background.The Children's Tumor Foundation is deeply saddened by the passing of Adam Goodkind, our past CTF Ambassador and longtime, valued member of the NF community. We extend our heartfelt condolences to his family, friends, and loved ones.
As CTF Ambassador and an active voice in the NF community, Adam offered an honest and hopeful perspective on life with neurofibromatosis type 2 (now called NF2-related schwannomatosis). His openness and intellect resonated deeply with everyone who met him. Over time, he continued to engage with the NF community in new ways - including lending his talents to CTF's Hack4Rare data event, where patients, scientists, and technologists work together to spark ideas and advance NF research.
"As an NF patient, taking part in the hackathon and working on a treatment solution was really enjoyable and gave me a feeling of empowerment over my NF," Adam said. "With a disease like NF, so much is out of my hands, but it feels great to be able to take an active role to improve my condition and the lives of people with NF."
That sense of purpose defined Adam - he approached challenges with curiosity and determination, finding meaning not only in his own work but in supporting progress for others.
Reflecting on the hackathon, he added, "It was genuinely inspiring to see all of the different approaches other competitors are taking to tackle NF. It makes me confident that the future of rare disease research is in good hands."
Adam's curiosity, optimism, and quiet strength left a deep mark on all who knew him. His courage was matched by his warmth, humor, and unwavering belief in the power of collaboration to make life better for those who follow.
In his honor - and in honor of all those we've lost to NF - we remain steadfast in our commitment to drive treatments forward and bring hope to every family affected by NF.
Our hearts are with Adam's family, friends, and all who knew and loved him.
The Children's Tumor Foundation published this content on November 05, 2025, and is solely responsible for the information contained herein. Distributed via Public Technologies (PUBT), unedited and unaltered, on November 05, 2025 at 19:43 UTC. If you believe the information included in the content is inaccurate or outdated and requires editing or removal, please contact us at [email protected]